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- #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
- 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
- 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
- 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

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