Advanced Search

Home / Site Map

Site Map

Pages

Posts by category

Category: Uncategorized
- Rare Action Network’s Maria Bellefeuille Interviewed by Patient Empowerment Network Leading up to Living Rare Forum
- #NORDinthenews: NORD’S Mary Dunkle interviewed on WFAN Sports Radio on all things rare disease
- Students for Rare Featured Student: Viridiana Murillo
- #NORDinthenews: NORD Summit content featured in two new articles
- NORD releases statement on Administration’s recent changes to medical deferred action policy
- Voices of Rare Cancer: Mackenzie’s Story
- Read the Inspiring Personal Story of a NORD Member Organization Leader
- NORD Launches New Program Aimed at Providing Caregivers with Relief
- NORD Publishes Report on Post-Transplant Lymphoproliferative Disease
- Moving documentary on Joshua Frase Foundation, Nibs – the matriarch of the first ever MTM dog colony, and the power of patient advocacy
- Changing the Landscape of Rare Disease Research
- NORD and Neurology Reviews Publish Special Report
- President Obama Signs Advancing Hope Act
- NORD in the News: Financial Times Highlights NORD’s Training and Advice for Family Foundations
- Dr. Arthur Caplan: 2016 Rare Impact Award Honoree
- Dawn Laney: 2016 Rare Impact Award Honoree
- Debra Miller: 2016 Rare Impact Awards Honoree
- Happy Mother’s Day from NORD!
- NORD Announces New VP of Patient Services and General Counsel
- Member Spotlight: Cure SMA
- Requests for Proposals
- NORD Issues Statement on FDA’s New Associate Director for Rare Diseases
- Member Spotlight: WSCTF
- Member Spotlight: AGMD
- Member Spotlight: CdLS Foundation
- Member Spotlight: AMEN Support
- People Magazine Turns Spotlight on Rare Diseases with Personal Stories from Country Music Star Randy Rogers and Model Lauren Wasser
- Rare Disease is a Common Cause
- 2015 Portraits of Courage
- 2015 Portraits of Courage Honoree, Lori Sames
- 2015 Portraits of Courage Honoree, Yusuf Patel
- NORD Volunteer Sheds Light on CdLS for CdLS Awareness Day
- 2015 Portraits of Courage Honorees, Glenn and Cara O’Neill
- 2015 Portraits of Courage Honoree, Savannah Hollis
- 2015 Portraits of Courage Honoree, Sophia Hanson
- 2015 Portraits of Courage Honoree, Bailey Gribben
- 2015 Portraits of Courage Honoree, Tony Ferrandino
- 2015 Portraits of Courage Honoree, Laura Crandall
- 2015 Portraits of Courage Honoree: Emily Argersinger
- Get to Know Portraits of Courage Honoree, Devin Alvarez
- Running for Rare Diseases Takes On Boston Marathon
- Announcing the 2015 Portraits of Courage Honorees
- Can Crowdfunding Help Cure a Rare Disease? Cure Black Bone Disease: Time Is Running Out.
- Rare Disease Day 2015 was the biggest and most impactful yet!
- FDA Commissioner on Medical Product Innovation
- NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy
- Today is Rare Disease Day 2015
- NORD Announces #1in10 Campaign to Raise Awareness for Rare Disease Day® on February 28
- Join NORD to Celebrate Rare Disease Day
- Advancing Research: NORD Partners with Lundbeck for 6th Raise Your Hand Campaign
- Partnering with Hemophilia Federation of America for Rare Disease Day and Hemophilia Awareness Month
- Featured NORD Member Org: CTF
Category: Press Releases
- A Cure In Sight, in partnership with the UCSF Ocular Oncology Center and NORD, Launches Landmark Ocular Melanoma Natural History Study
- NORD Joins Coalition Representing Millions of Patients to Release Telehealth Principles
- Rare Cancer Day 2020 To Take Place on September 30
- 2020 NORD Summit to Feature Leading Experts in Public Policy, Patient Advocacy, Rare Disease Research and Regulatory Science
- NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic
- CZI Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns
- NORD’s Jayne Holtzer Rare Disease Research Grants Program Continues Its Commitment to Rare Disease Research with New Funding Opportunities
- NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series
- NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research
- In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program
- New Community Survey Findings from NORD Reveal Significant Impact of COVID-19 on Americans Living with Rare Diseases
- NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19
- NORD Launches Natural History Study for Undiagnosed Rare Diseases
- NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!
- NORD State of the States Report Shows Key Policy Improvements Were Achieved by States in 2019, But More Progress Is Needed to Support Americans Living with Rare Diseases
- NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report
- NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!
- NORD Welcomes Two New Members to Board of Directors
- Innovative Data and Analytics Platform to Accelerate Drug Development for Rare Diseases
- Mark Your Calendars – October 1 is Rare Cancer Day!
- FUNDED BY FDA, C-PATH and NORD TO LAUNCH RARE DISEASE DATA ANALYTICS PLATFORM
- 2019 NORD Rare Summit to Feature Caregivers Who Have Moved from Inspiration to Action
- NORD Launches Digital Education Initiative with PlatformQ Health
- NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES
- National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards
- NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States
- NORD Research Grant Program Celebrates 30th Anniversary, Funding Opportunities Announced
- NORD IAMRARE DHPS Patient Registry Launched
- The 2019 Rare Neurological Disease Special Report Is Now Available
- NORD Announces Honorees for 2019 Rare Impact Awards
- NORD IAMRARE GBS|CIDP Patient Registry Launched
- NORD IAMRARE APS Type 1 Patient Registry Launched
- NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!
- NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases
- Updated Study Analyzes Use and Cost of Orphan Drugs
- Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs
- NORD IAMRARE HI Global Registry Launched
- Five Years of Patient Registry Success: NORD’s IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement
- NORD Receives Grant from Anthem Foundation for Expansion of Rare Disease Database®
- NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire
- 2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation
- Healthline and NORD Announce Recipients of 2018 Stronger Scholarships
- NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered
- NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act
- New Research Funding Opportunities Available from NORD
- Neurology Reviews® and NORD Publish the 2018 Rare Neurological Disease Special Report
- NORD Rare Action Network® 2018 State Report Card
- NORD to Collaborate with FDA on Pilot Patient Engagement Activity
- NORD Launches 7,000 Mile Rare Movement
- NORD and the Orphan Drug Act Celebrate 35th Anniversaries
- Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally
- More Than 200 Patient Groups Call On Congress to Reinstate the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act
- NORD Releases New Documentary called “Good Morning Peyton”
- New Study Examines Use and Cost of Orphan Drugs
- Registration Open!
- NORD Announces Three New Hires to Lead Research, Education and Business Development Programs
- NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan
- NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)
- NORD Publishes New Report on Sitosterolemia
- NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017
- NORD Issues Statement on the Better Care Reconciliation Act of 2017
- NORD Publishes New Rare Disease Report on CARD9 Deficiency
- NORD Releases Statement on Orphan Drug Assessment & Pricing Summit
- Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients
- Leading Patient Advocacy Groups Stand Together to Oppose American Health Care Act
- NORD Issues Statement Opposing ‘MacArthur Amendment’, the Latest Version of the American Health Care Act
- NORD Names New Director of Membership
- International Pemphigus & Pemphigoid Foundation Launches Largest-Ever Study of Pemphigus and Pemphigoid
- NORD and Friends of Cancer Research Issue Joint Statement In Advance of this Week’s Congressional Hearings on FDA User Fees
- NORD Joins 86 Organizations to Call on Congress to Protect Medicaid
- NORD Issues Statement Opposing the Preserving Employee Wellness Programs Act (H.R.1313)
- NORD Announces Honorees for the 2017 Rare Impact Awards
- NORD Issues Statement as House Committees Review the American Health Care Act
- NORD Issues Statement on Release of the American Health Care Act
- Eleven Major Patient Groups Outline Joint Position on Health Care Reform
- Musical Act Announced for Rare Impact Awards on May 18th
- NORD Issues Statement on President Trump’s Address to Congress
- NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness
- NORD Awards New Research Grants for Rare Disease Research
- NORD Publishes Report on Spontaneous Intracranial Hypotension
- Orphan Drugs Represent 41 Percent of All New Medications
- First Natural History Registry for Necrotizing Enterocolitis
- Largest-Ever Study of SYNGAP1 (MRD5), Linked to Autism, was Launched
- President Signs 21st Century Cures Medical Innovation Bill Into Law
- State Report Card to Help People with Rare Diseases
- Senate Passes Landmark 21st Century Cures Act
- NORD Ready to Address New Challenges Based on Election Results
- Fibrous Dysplasia Foundation and NORD Launch Cutting-Edge Study of Fibrous Dysplasia/McCune-Albright Syndrome
- NORD Publishes Physician Guide to Cutaneous T-Cell Lymphoma
- Nominations Open for NORD’s 2017 Rare Impact Awards
- Rare Diseases & Orphan Products Breakthrough Summit Speakers
- A New Partnership that Helps Raise Awareness of Rare Diseases
- Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases
- NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)
- FDA Commissioner Dr. Robert Califf to Speak at NORD Summit in October
- NORD Publishes Physician Guide to Mitochondrial Myopathies
- NORD Applauds Senate for Authorizing Medical Foods Coverage for the Military in National Defense Authorization Act (S.2943)
- NORD Appoints Genetics and Metabolic Specialist Marshall L. Summar M.D. as Chairman of the Board
- NORD to Hold Rare Diseases Roundtable
- NORD Website Reaches 1 Million Monthly Visits
- NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases
- NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement
- NORD Announces 2016 Rare Impact Award Recipients to be Honored on May 17
- Running for Rare Named an Official Charity Partner of the 2016 TCS New York City Marathon Set for Sunday, November 6, 2016
- Running for Rare Marathon Team Expands Under NORD
- NORD Issues Statement on New FDA Commissioner Robert Califf, M.D.
- FDA Approves 21 Orphan Drugs for Rare Diseases in 2015, Sets Record for Second Consecutive Year
- Get Involved in Your State on Rare Disease Day
- NORD Developing 20 Natural History Studies for 20 Rare Diseases
- Rare Disease Day 2016 Theme and Slogan Announced!
- NORD Issues Statement on NIH Appointment of New Director for Office of Rare Diseases Research
- New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension
- Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases
- Global Voice for Rare Disease Patients Launches Today: Rare Diseases International
- NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative
- The Will to Live and the Strength for a Cure
Category: Featured News
- Voices of Rare Cancer: Jan’s Story
- Head of the Herd: Susan Thornton, CEO, Cutaneous Lymphoma Foundation
- NORD and C-Path Release Video on Rare Disease Challenges in Each Step of the Drug Development Process
- US Senator Richard Blumenthal (D-CT) releases statement of support regarding Rare Cancer Day
- NORD and KrabbeConnect Launch KrabbeCURES to Study Globoid Cell Leukodystrophy
- Voices of Rare Cancer: Emily’s Story
- Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect
- A Newborn Screening Reflection: Sarah’s Story
- Voices of Rare Cancer: Jeremy’s Story
- #RareCancerDay is September 30! NORD will share facts, information and patient stories throughout the month.
- September is Newborn Screening Awareness Month
- Head of the Herd: Deb Ayres, President, The Avalon Foundation
- New Video Series on the 5 Steps of the Drug Development Process and How RDCA-DAP Can Help
- NORD CEO Affirms Science Should Guide FDA’s Work
- NORD Releases Four Guiding Principles on Telehealth Issues
- Head of the Herd: Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)
- NORD Included in Parade.com Article on Rare Autoimmune Diseases
- Head of the Herd: Seth Rotberg, Co-founder, Our Odyssey
- Head of the Herd: Taylor Kane, Founder and President, Remember the Girls
- The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience
- NORD Issues Statement on Recently Introduced “Promising Pathway Act”
- FDA Oncology Center of Excellence Listening Session with NORD: A Patient Perspective
- The Motley Fool Chooses NORD as One of Three Nonprofits Worthy of Donations
- NORD’s New Genome Editing Videos Address Patient/Caregiver Questions
- Head of the Herd: Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America
- Rare Reflections: Jacob’s Story
- 2020 Rare Diseases & Orphan Products Breakthrough Summit Will Be a Virtual Event, Oct. 8-9
- NORD Supports the Black Community and An Equal, Inclusive, Safe, Healthy Future for All Americans
- New video from NORD and C-Path addresses the question: “What is a Registry?”
- Head of the Herd: Emile Najm, KAT6A Foundation
- NORD to Host an Externally-led Patient-Focused Drug Development Virtual Meeting on Krabbe Disease, Thursday, October 29
- Infographic Illustrates Effects of the COVID-19 Pandemic on Rare Disease Patients and Families
- Historic “Voice of the Patient” Report on Pyruvate Kinase Deficiency Now Available on FDA Site
- NORD Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging
- The 2020 Living Rare, Living Stronger Forum Will Now Be Presented As A Virtual Event
- NORD’s Director of Research Programs Publishes Article on Rare Disease Research in the 2020 Rare Neurological Disease Special Report
- Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community
- NORD and FMC’s Gene Therapy Survey: A Call to Action for Healthcare Professional Education
- Findings from NORD and Frontline Medical Communications Survey Highlight Gene Therapy Knowledge Gaps Among HCPs
- Fanconi Anemia Research Fund and NORD Launch Natural History Study of Fanconi Anemia
- Neurology Reviews and NORD Publish Annual Rare Neurological Disease Special Report
- NORD Releases 2019 Annual Report, “At the Heart of Progress in Rare Disease”
- NORD and EURORDIS-Rare Diseases Europe Issue Joint Statement on COVID-19 and Orphan Drug Legislation
- Pharmaceutical Medicine Publishes Paper by NORD Research Team as a Leading Article
- NORD Welcomes Prashant Goel as Vice President of Information Technology
- NORD Member VHL Alliance Held Jeffersonian Dinner in Early March
- US News & World Report Features NORD and Dr. Marshall Summar in “What To Do If Your Child Is Diagnosed with a Rare Disease”
- COVID-19 Resources for Non-profit Leaders and the Community
- Head of the Herd: Michele Sloan, Foundation to Fight H-abc
- NORD Announces Important Update Regarding the 2020 Living Rare Forum
- #NORDinthenews – Article on Facts Around Rare Disease Features NORD’s Kristen Angell and Vanessa Boulanger
- Rare Disease Day 2020 Advocacy Events Recap
- Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation
- NORD’s Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community
- Savannah’s Story in honor of Rare Disease Day
- Bridget’s Story in honor of Rare Disease Day
- Ashlee’s Story in honor of Rare Disease Day
- NORD Debuts Rare Disease Day 2020 Video
- Head of the Herd: Bonnie Royster, CdLS Foundation
- Essay on protecting the Orphan Drug Act by NORD’s Peter L. Saltonstall published in CQ Researcher
- Head of the Herd: Mike Morris, TANGO2 Research Foundation
- Students for Rare Featured Student: Allison Herrity
- NORD Launches New Patient Assistance Program Providing Support to Eligible NMOSD Patients
- NORD Reaches 300 Members!
- Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation
- NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up
- #NORDinthenews: Washington Post profiles NORD’s Rare Disease Database and Rarediseases.org
- NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development
- What Questions Would You Ask About Gene Editing?
- A First Time for Everything: Marissa’s Running for Rare Story
- Rare Caregivers Corner: Debra’s Story
- #NORDintheNews: NORD Featured in Syndicated Article on Parents’ Intuition and Rare Disease
- NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up
- Reflections of a First Time NORD Summit Attendee: Matthew’s Story
- November is National Family Caregivers Month
- NORD supports Dr. Stephen Hahn’s nomination for FDA commissioner
- New NORD Member PALS Shares About the Impact of Free Flights for the Rare Disease Community
- NORD’s Rare Action Network Mobilized for a Successful Hill Day
- 2019 NORD Summit Breaks Records with Largest Attendance Ever!
- NORD Posts New Addition to Video Library – Pediatric Movement Disorders: Guidance for Parents & Physicians
- Information on current NATPARA® shortage
- A Joint Op-Ed from NORD and Friends of Cancer Research: Despite Criticism, FDA is Doing What is Right By Rare Cancer Patients
- Voices of Rare Cancer: Lisa’s Story
- Voices of Rare Cancer: Brian’s Story
- Voices of Rare Cancer: Susan’s Story
- Voices of Rare Cancer: McKinnon’s Story
- Voices of Rare Cancer: Aidan’s Story
- Voices of Rare Cancer: Lauren’s Story
- Today is #RareCancerDay!
- Amish Community Testimony
- Voices of Rare Cancer: Nicole’s story
- BioNews Service Previews 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit
- 2020 Living Rare, Living Stronger NORD Patient and Family Forum Location Announced
- Voices of Rare Cancer: Graeleigh’s Story
- NORD Expands Rare Disease Video Library
- Voices of Rare Cancer: Paul’s Story
- Students for Rare Featured Student: Jaime Tan
- Voices of Rare Cancer: Kristin’s Story
- NORD’s Mary Dunkle Comments on Diagnosis Challenges and Urges Caution on Using Internet Sources in New Article
- FDA Acting Commissioner to Deliver NORD Rare Summit Keynote
- NORD Announces Four New Board Members
- New Video on PTLD Added to NORD Rare Disease Video Library
- Registration Open for 2020 NORD Rare Summit
- Help for rare disease patients impacted by Hurricane Dorian
- NORD Awards Ten New Grants in Eight Disease States for Rare Disease Research
- The NORD Rare Disease Video Library Offers New Educational Resources
- Catch Living Rare Forum Plenaries and The Rare Impact Awards on Facebook Live!
- Exciting Rare Impact Awards Announcements
- The Platelet Disorder Support Association (PDSA): 2019 Abbey S. Meyers Leadership Award
- The Honorable Michael McCaul: 2019 Rare Impact Award Honoree
- The Honorable Sarah Davis: 2019 Rare Impact Award Honoree
- Deborah Skolaski: 2019 Rare Impact Award Honoree
- Madison Shaw: 2019 Rare Impact Award Honoree
- Dr. Debra Regier: 2019 Rare Impact Award Honoree
- Dr. Wendy Chung: 2019 Rare Impact Award Honoree
- Donna Appell, R.N.: 2019 Rare Impact Award Honoree
- Become a rare disease mythbuster during NORD’s Living Rare, Living Stronger Patient & Family Forum
- NORD Publishes Report on Primary Distal Renal Tubular Acidosis
- Living Rare, Living Stronger full agenda with speakers now available
- NORD Video Provides Advice for the Newly Diagnosed
- NORD announces expansion of three Patient Assistance Programs
- Orphan Drug Act Resolution Introduced in the House of Representatives
- Rare Disease Day 2019 Notes and Successes
- Connor’s Story in Honor of Rare Disease Day
- India’s Story in Honor of Rare Disease Day
- McCarthy Story in Honor of Rare Disease Day
- Brazeau Family Story for Rare Disease Day
- 10 Ways to Show Your Stripes this Rare Disease Day!
- Featured Student: Scarlett Eagle
- NORD Welcomes Rachel Sher as Vice President of Regulatory and Government Affairs, Lesli Nordstrom as Director of Marketing and Communications
- NORD IAMRARE KAT6A Patient Registry Launched
- Rare Disease Advocates Share Ideas for How to Mark Rare Disease Day 2019
- Rare Disease Day 2019 is Only 10 Weeks Away!
- New Study Finds Orphan Drug Exclusivity Working As Intended, On-Market Orphan Drug Prices Rise Slower than Common Drugs
- The 2019 Rare Impact Awards will take off at Space Center Houston, Saturday, June 22!
- Year-End Message from NORD’s President and CEO
- Orphan Drug Act Resolution Introduced in Congress
- NORD Creates Rare Disease Patient & Caregiver Resource Center
- Chat, Chew, and Be Challenged! Lunchtime Learning at the NORD Rare Summit
- Three Big Reasons Not to Miss the 2018 NORD Rare Summit
- NORD 35th Anniversary Blog Series: 2010-2018 (Present)
- Patient/Caregiver Opening Address Announced for NORD Rare Summit
- Join us at the 2018 NORD Rare Summit
- NORD Issues Statement on the Passing of Dr. Robert M. Campbell
- FDA Commissioner Dr. Scott Gottlieb Confirmed as 2018 NORD Rare Summit Keynote Speaker
- Get to know Jill Pollander, NORD’s new Director of Patient Services
- Spencer and Levy-Yeboa Syndrome, the Story of Our Son
- NORD 35th Anniversary Blog Series: 1990s-2000s
- Last Rare Disease Day Event of 2018 a Success in Pennsylania
- NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients
- NORD Issues Statement on Increasing Use of CoPay Accumulator Programs in Health Plans
- NORD Issues Statement Regarding House Passage of the Right to Try Act (S.204)
- Save the Date for NORD’s 2018 Rare Summit
- NORD statement in response to American Patients First, the Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs
- Watch LIVE: NORD’s 35th Anniversary & Rare Impact Awards Celebration
- NORD 35th Anniversary Blog Series: The Early Years (1980s)
- 35 Ways and Growing: NORD’s Service to the Rare Disease Community
- Robert Campbell, Jr., M.D.: 2018 Lifetime Achievement Award Honoree
- Estelle Benson, Founder of GBS|CIDP Foundation International: Abbey S. Meyers Leadership Award Honoree
- Richard Pazdur, M.D.: 2018 Public Health Leadership Award Honoree
- Patrick Dunegan: 2018 Rare Impact Award Honoree
- Elisabeth Dykens, Ph.D.: 2018 Rare Impact Award Honoree
- Maria Kefalas, Ph.D.: 2018 Rare Impact Award Honoree
- Ellen V. Sigal, Ph.D.: 2018 Rare Impact Award Honoree
- Chris Ulmer: 2018 Rare Impact Award Honoree
- NORD Shares News on 35th Anniversary Celebration Presenting the Rare Impact Awards
- NORD Issues Statement Regarding Governor Bevin’s Veto of Kentucky Senate Bill 7
- NORD Reaction to Recently-Enacted Government Spending Bill
- NORD Issues Statement Regarding House Vote on Right to Try
- National Organization for Rare Disorders (NORD) Announces Honorees for 2018 Rare Impact Awards
- NORD Joins Over 100 Patient and Provider Organizations in Opposition to Right to Try
- NORD Issues Statement Regarding House Vote on Right to Try
- 83 Patient and Provider Organizations Remain Opposed to Right to Try Legislation
- Another Successful Rare Disease Day®
- NORD Joins 125 Patient Organizations in Support of Medicaid Formulary Access
- One-pager from NORD on Opposition to Right to Try Act
- NORD Statement Regarding State Proposals to Alter Their Medicaid Program
- Current Funding Opportunity: NORD Research Grants for Rare Diseases
- NORD Sends Letter to House of Representatives on Right to Try Act
- NORD Issues Statement on Confirmation of New Secretary of HHS, Alex Azar
- Letter from NORD to Majority Leader Mitch McConnell and Minority Leader Chuck Schumer in support of Alex Azar’s candidacy
- NORD Issues Statement in Response to Senator Orrin Hatch’s Announced Retirement
- NORD Awards Five New Grants for Rare Disease Research
- NORD Issues Statement in Response to Congressional Consideration of the Tax Cuts and Jobs Act Conference Report
- Together, we can be stronger for those that need us.
- Over 160 Patient Organizations Reemphasize Support for the Orphan Drug Tax Credit
- NORD Issues Statement in Response to Senate Vote on the Orphan Drug Tax Credit
- NORD Publishes Information for Physicians and Patients on Three Rare Diseases
- Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit
- Statement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit
- NORD Publishes New Educational Resource on Li-Fraumeni Syndrome
- NORD Issues Statement on Nomination of Alex Azar for Secretary of the Department of Health and Human Services
- NORD Issues Statement in Response to Senate Finance Committee’s Proposal to Weaken the Orphan Drug Tax Credit
- NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)
- NORD Issues Statement on Senate Leadership’s Recent Update on “Graham-Cassidy” Proposal
- FDA Announces First Gene Therapy in U.S.
- Downloadable Hurricane Harvey Emergency Relief Resources
- NORD Issues Statement in Response to the Signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017
- Advance the Dialogue at the NORD Rare Summit
- NORD Issues Statement on the Latest ACA Repeal and Replace Developments
- NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)
- The BCRA and Healthcare Reform: NORD’s Latest Update
- NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit
- NORD Issues Statement Regarding the Release of Revised Draft of the Better Care Reconciliation Act
- The National Health Council and NORD Commend House Passage of FDA User Fee Reauthorization; Urge Senate to Follow Suit
- NORD Publishes New Rare Disease Report on Bosma arhinia microphthalmia (BAM) syndrome
- NORD Rare Action Network℠ Releases Summer 2017 State Policy Legislative Tracker
- NORD Issues Statement on the FDA’s Orphan Drug Modernization Plan
- NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act
- NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage
- NORD Publishes Report on Hereditary Sensory Autonomic Neuropathy Type 1E
- NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb
- Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements
- NORD Issues Statement on Today’s Passage of the American Health Care Act
- Cynthia Tifft, M.D., Ph.D – 2017 Rare Impact Award Honoree
- Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)
- Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree
- Rare Disease Summer Family Camp: A Place to Call Home
- Join NORD and ABC News for a Rare Disease Day® Tweetchat on Feb. 28
- Raise Your Hand for Rare Disease Research
- Family Moves Across State Lines to Receive Better Access
- A Message from Our President and CEO
- Happy Father’s Day from NORD
- NORD Members Share Great Resources for ER Visits During #RareERChat
- NORD Summit 2016
- Watch Live: Tomorrow’s Rare Impact Awards Ceremony
- Desiree Lyon Howe: 2016 Rare Impact Award Honoree
- Dr. Stephen Cederbaum: 2016 Rare Impact Award Honoree
- Noah Victoria: 2016 Rare Impact Award Honoree
- New Paper Addresses Health Care Costs and Patient Assistance Programs
- RareAction Network℠ Releases April State Legislative Tracker
- A Special Thank You to Volunteers in the Rare Disease Community
- Introducing the 2016 Rare Disease Day® Highlights Video
- NORD Founder Publishes Memoir Detailing Her Tireless Work as Parent-Advocate
- Neurology Reviews Publishes The Rare Neurological Diseaes Special Report
- Today is Rare Disease Day®
- Running on Air for Rare Disease Day
- Rare Disease Day Video for 2016 Launched
- Join the Running for Rare Team!
- FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model
- Register for the 2016 Rare Impact Awards
- Cure HHT Foundation
- CCHS Family Network
- Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.
- Pachyonychia Congenita Project
- Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments
- Be a Hero: Help NORD Educate Current and Future Medical Professionals
- Joshua Frase Foundation
- National Brain Tumor Society
- Cutis Laxa Internationale
- CMTC-OVM
- Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life
- The Guthy-Jackson Charitable Foundation
- Giving Spotlight: HomeServe USA Leadership and Employees Donate More Than $26,000 to NORD
- Taking on NYC and a Rare Disease: An Introduction
- Neuroendocrine Tumor Research Foundation
- NORD Releases First-Ever State Progress Report for Rare Diseases
- Rett Syndrome Research Trust
- Liam Cruz’ Diagnostic Journey
- Target Cancer Foundation
- Raise Your Voice: Rare Disease Day 2016 is Coming
- Narcolepsy Network
- The Undiagnosed: Orphans of the Rare Disease Community
- Dravet Syndrome Foundation
- Jill Zeigler’s Story: Life with aHUS
- HLRCC Family Alliance
- Rare Disease Day 2016 Theme and Slogan Announced
- NORD Named Charity of the Week By The Week Magazine
- The LAM Foundation
- Miss Pre-Teen Connecticut Visits NORD
- The Sturge-Weber Foundation
- Hope for Kids with Heart Disease: September is Children’s Cardiomyopathy Awareness Month!
- NORD’S Free Student Membership: Sign up Today!
- Miss Connecticut Talks to NORD about Rare Diseases, the Miss America Pageant, and Voting for America’s Choice
- Member Spotlight: FIRST
- New NORD PSA
- Rare Action™ Road Tour, Salt Lake City, UT
- Rare Disease Report and NORD Announce Editorial Collaboration
- Rare Action™ Road Tour, Salt Lake City, UT
- Rare Action™ Road Tour, Denver, CO
- Taking Rare Action™ on the Road
- Member Spotlight: CLOVES Syndrome Community
- Rare Action™ Road Tour, Oklahoma City, OK
- Miss Iron County Supports Rare Disease Advocacy and Awareness
- Rare Action™ Road Tour, Houston, TX
- Rare Action™ Road Tour, Tallahassee, FL
- Member Spotlight: LGDA
- Rare Action™ Road Tour, Atlanta, GA
- Q & A with Russ Illes, Author of Duct Tape Won’t Fix This
- 2015 Rare Disease and Orphan Products Breakthrough Summit
- Lauren Hill Dies at 19 after Battle with Brain Cancer, DIPG
- PMPRF President’s Statement on Stuart Scott’s Passing, and his Impact on the Appendix Cancer Community
- The Will to Live and the Strength for a Cure
- Life is a Special Occasion
- Multiple Endocrine Neoplasia Type 1: One Family’s Fight
- Taking Action for ACD
- NORD Celebration Highlights the Courage of Children and Adults Living with Rare Diseases
- Portraits of Courage Celebration
- NORD Launches Rare Action Network
- Multiple Endocrine Neoplasia Type 1: One Family’s Fight
- Taking Action for ACD
- Medical Research Should Be Everyone’s Priority
- Living with Blood Cancer
- Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September
- The Will to Live and the Strength for a Cure
- NORD at Capitol Hill Hearing: Patients Have Unique Perspective That Needs to be Heard
- NORD Recommendations for Advancing Drug Discovery, Development, and Delivery
- Are Civility and Mature Behavior Really Too Much to Expect?
- Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill
- NORD Calls Proposed Repeal of Orphan Drug Tax Credit “Anti-Patient and Anti-Public Health”
- FDA Creates New Web-Based Educational Tool About the Agency
- Our Shared Vision for Rare Disease Day
- BioNJ Presents Patient Advocate Award to NORD
- Building on Policy Momentum
- Statement on Congressman Waxman’s Retirement
- Genzyme and NORD Establish Program to Help Undiagnosed Patients with Rare Diseases
- Staying Focused on What Really Matters About the ACA
- 30 Years After the Orphan Drug Act: It Still Takes Too Long for People with Rare Diseases to Get an Accurate Diagnosis
- Even “Well Known” Rare Diseases Pose Diagnosis Problems
- Enrollment in Your Health Insurance Marketplace
- Supreme Court Decision Consistent With Longstanding NORD Position
- Orphan Drug Act at 30: Will Success Become Too Expensive?
- NORD Issues Statement on the Death of Actor Jack Klugman
- Patients Will Benefit From New Public-Private Partnership
- What Would You Consider “Essential Health Benefits” For the Disease of Concern to You?
- The Story Behind the Rare Disease Day School Curriculum
- Glybera Becomes First-ever Gene Therapy Approved in Europe
Category: Medical
- Featured Student: Jennifer Shoskes
- NORD Seeks Proposals for CME Partnership
- Early Diagnosis: Perspectives from NORD Student Chapter Leader, Harjot Randhawa
- NORD Publishes New Report on RYR-1 Related Diseases
- Beth Nguyen, R.N. – 2017 Rare Impact Award Honoree
- Matthew Might, Ph.D. – 2017 Rare Impact Award Honoree
- Ellie McGinn – 2017 Rare Impact Award Honoree
- Dr. Frederick Kaplan, M.D. – 2017 Rare Impact Award Honoree
- Key Dates Approaching for NORD Summit
- NORD Hosts Tweetchat with Texas Children’s Hospital on Navigating the Pediatric ER (May 26)
- New SIDS Study Says Other Factors May Increase Risk
- NORD Publishes Guide to Promote Physician Awareness of Rare Lung Disorder
- Rare Disease of the Day
- Saving Eliza
- Thoughtful Biosimilars Policy Is Best Way to Ensure Optimum Patient Outcomes
- Images from the Portraits of Courage Celebration
- Engineering Treatments for Rare Disorders
- A CRISPR Approach to Genome Editing
- Informed Consent in Biobank Research
- New Guidelines on Testing Kids’ DNA–the Cliff’s Notes Version
- Can IBM Watson Replace Dr. Dhaliwal? Probably Not!
- Creative Collaborations May Be Key to Reducing Chemotherapy Risks
Category: Patients & Members
- Rare Disease Day 2020 and the Mission I Choose to Accept, by Debbie Drell, Director of Membership for NORD
- NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum
- Why Rare Disease Day Is Important to Me, by Chris Madden
- Gina and Gia’s Story in Honor of Rare Disease Day
- Wyatt’s Story in Honor of Rare Disease Day
- Zuhriah’s Story in Honor of Rare Disease Day
- Tucker’s Story in Honor of Rare Disease Day
- Rare Caregivers Corner: Q&A with Stephanie
- Rare Caregivers Corner: Cathy’s Respite Story
- Upcoming Externally-Led Patient Focused Drug Development Meeting for PKD Community
- NORD’s 2019 Living Rare, Living Stronger Weekend Highlights
- Arthur’s CIDP Story
- Hear from NORD’s registry community
- Fibrolamella Cancer Foundation Thanks NORD for Help with SSA Compassionate Allowance Listing
- Recap: NIH NCATS Day – Partnering with Patients for Smarter Science at the NIH
- A Group No One Applies to Join
- Penn State Graduate Rare Disorder Survey
- Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day
- September is Children’s Cardiomyopathy Awareness Month
- NORD Publishes Expanded Access FAQ
- Guest Blog: Tour For A Cure
- Advocacy Alert: Illinois Rare Disease Commission Bill
- RareAction Network℠ Releases May/June State Policy Legislative Tracker
- Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)
- Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission
- Apply Now: The Hole in the Wall Gang Camp Hosts First-Ever Rare Disease Family Camp
- Notification (2/25/2016): Patient Assistance Programs
- American Plasma Users Coalition (A-PLUS) Applauds Recent Move by Department of Health and Human Services to Limit Out-of-Pocket Costs
- Rare Disease Artists’ Work Traveling Globe to Raise Awareness
- NORD and University of Maryland Partner on PCORI Award to Advance Rare Disease Research
- CMS Turns 50!
- Illinois Man Uses His Myelofibrosis Story to Help Others
- Knowing More About Noonan
- Living With Essential Thrombocythemia (ET)
- Not a Dry Eye in the Room: Families Tell FDA about Their Daily Struggles
- VHL Alliance and NORD Launch New International Databank
- Trivia Can Save Lives: How a Jeopardy Question Raised Awareness of a Rare Disease
- Adventures of an Advocate: Annette De Bow’s Big Journeys
- The Power of Words
- What are Your Favorite Rare Disease Movies?
- High-School Students Raise Awareness
- Privacy Protection in Whole Genome Sequencing
- Campaign to Educate State Legislators for Rare Disease Day
- Barretstown – a Serious Fun Camp!
Category: Research
- Giving Spotlight: Honoring Mom-Mom’s Legacy with Research and Awareness
- NORD Announces Research Grants Available for Study of Rare Diseases
- NORD Awards New Research Grants for Rare Disease Research
- Research Grants for Rare Disease Research Available from National Organization for Rare Disorders (NORD)
- Registries for Rare Diseases: Involve the Patient
Category: Advocacy
- Tik Tok Influencer Mark Anastasio Challenges Connecticut Students to Stripe Out Their Schools
- NORD Issues Statement on FDA’s Impending Expanded Access Call Center
- NORD Invites Video Submissions on Advocacy Experience
- NORD Responds to the Administration’s “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”
- NORD Issues Statement on Recent CMS Actions Pertaining to Patient Access Within Medicaid Formularies
- TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act
- Your Help is Needed to #SaveCHIP
- Join Us for Rare Disease Day®
- Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases
- Protecting Your Healthcare Coverage
- Over 140 Patient Organizations Support the Orphan Drug Tax Credit
- Rare Disease Advisory Council Bill Moves through Pennsylvania House
- Advocacy Alert: Tell Congress to Act Now and Pass FDA User Fee Agreements
- NORD Rare Action Network℠ Releases Spring 2017 State Policy Legislative Tracker
- Brandon Hudgins – 2017 Rare Impact Award Honoree
- Reflections on FDA Listening Session
- Expansion of Medical Foods Coverage for Military Families Heads to the President, Having Passed in the Senate
- House Votes to Expand Medical Foods Coverage for Military Families
- House to Vote on New Version of 21st Century Cures Act Tomorrow
- November 15th Day of Action: 21st Century Cures
- $1.1 Billion in Federal Funding to Fight the Zika Virus
- The Hill publishes NORD op-ed: Congress must act now to help 15 million sick children
- ICER Comments Submitted
- NORD Responds to AHIP Report on Orphan Drug Act
- NORD Issues Statement in Response to PDUFA VI Commitment Letter
- NORD Issues Statement as Senate Postpones Vote on Cures Legislation
- July 13 Day of Action: Last Chance for Zika Funding
- Register: Rally for Medical Research Hill Day 2016, Sept. 21-22
- Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients
- Today, Tell Congress We Need #CuresNow
- Wall Street Journal Publishes NORD Letter to the Editor
- Help Tara Pass School Bus Legislation
- What the Omnibus Bill Means for Rare Diseases
- National Spotlight on FDA and Duchenne Muscular Dystrophy: What This Means for Everyone with a Rare Disease
- NORD Supports Nomination of Dr. Califf for FDA Commissioner
- NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act
- NORD Issues Statement on FDA Rejection of Citizen Petition
- Bennet, Burr, Warren, Hatch Introduce Bill to Help Patients by Facilitating Faster Development of Drugs for Rare Diseases
- FDA: Another tool helping developers navigate the difficult road to approval of drugs for rare diseases
- Urge Your U.S. Senators to Attend Sept. 16th Briefing on Neurological Disease Research
- Advocating for Rare Disease Patients at the NIH
- NORD Signs Letter with Center for Responsible Science Calling for Changes at the FDA
- NORD Files Amicus Brief to Protect Drug Development Incentives in the Orphan Drug Act
- Ensuring Access to Clinical Trials Act of 2015 Passes in the U.S. Senate
- NORD Issues Statement on House’s Approval of 21st Century Cures Initiative
- NORD Submits Final Comments on 21st Century Cures Act
- FDA Public Meeting on Chagas Disease Patient-Focused Drug Development
- NORD Outlines Steps to Promote Innovative Drug Discovery, Development and Delivery for Americans with Rare Diseases
- NORD Board Member Testifies Before Energy & Commerce Health Subcommittee
- Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits
Category: Industry
Category: Sticky Posts for Homepage
- Krabbe Virtual Meeting
- NORD Summit 2020
- NORDpod
- Visit the NORD Store
- COVID-19 Rapid Response Leadership Series
- COVID-19 Community Survey Report
- Living Rare, Living Stronger Forum
- NORD COVID-19 Relief Programs
- NORD Guidance on Coronavirus Prevention and Risk
- Support NORD’s COVID-19 Programs
- Head of the Herd
- Caregiver Respite Program
- Join NORD on Rare Disease Day
- NORD Patient Assistance Program for 2020
- Living Rare Living Stronger
Category: Sticky Posts for Patient Organizations
- Member Spotlight: UMDF
- Zan’s Journey: Diagnosed with SMS
Category: Sticky Posts for Patients and Families
- NTM Info & Research Inc.
- Autoinflammatory Alliance
Category: Sticky Posts for Industry
Category: Sticky Posts for Clinicians and Researchers
Category: Sticky Posts for Advocate
Category: Events
- A Celebration of NORD’s 35th Anniversary
- Nominations for the Rare Impact Awards Close Friday, January 12
- FDA Commissioner Dr. Robert Califf Delivers Keynote Address at NORD Summit
- Running for Rare Named an Official Charity Partner
- See What’s New and Exciting at the NORD 2016 Summit, Oct. 17-18!
- Join the Team: Running for Rare Takes on Hartford
- NORD Webinar Series
- Rare Disease Day
Category: Patient Stories
- Rare Caregiver Respite: Beth’s Story
- Kayte & Ashley’s Gastroschisis Story
- Nicole’s Gastroschisis Story
- Rare Caregiver Respite: Leah’s Story
- Rare Caregiver Respite: Debra’s Story
- Jenny’s ACPMP Story
- Ana’s Story for Rare Disease Day
- Mackenzie’s Mission
- Becoming a Marathon Runner
- Living with ALPS
- Tougher than an NFL Football Player
- Living Bella Soul
- Life with CGD
- Living with Seizure Disorder
- They Said things like, “She’ll Grow Out of It”
- From Mother to Daughter
- Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity
- Giving Spotlight: Paula Mann Honors Son, Garrett, with Donation to NORD
- Guest Blog: A Parent Advocate & Author Discusses Courage
- The Fight for a Cure for Duchenne
Category: Get Involved
- Featured Student: Alexander Pham
- 35 Ways to Celebrate the 35th Anniversary of NORD
- Join NORD and ABC News for a Rare Disease Day Tweetchat on March 1
Category: Rare Disease Day
- Astellas Recognizes Rare Disease Day
- Rare Disease Day is a Global Movement
- Apellis Pharmaceuticals Recognizes Rare Disease Day
Category: Head of the Herd
Category: COVID-19
Category: #NORDintheNews
Category: RareLaunch
Category: RDCA-DAP
Category: Newborn Screening
Category: Voices of Rare Cancer 2020

Venues

Organizers

Events

Carousels

CME Videos

Event Agendas

COVID-19 Resources

Speakers

Program Resources

Organizations

Rare Diseases

Companies

Physician Guides

Videos

Ads

Video Status

Past Presentations

Year

Policy Statement Categories

Policy Statement Issue Types

Event Categories

Summit 2020

Program Resource Categories

RareLaunch

Event Categories

Category

Video Topics

Alone we are rare. Together we are strong.®