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191 Search Results for: Rare action network


Rare Disease Information

NORD Rare Disease Database

Angioimmunoblastic T-Cell Lymphoma

Angioimmunoblastic T-cell lymphoma (AITL) is a rare form of non-Hodgkin lymphoma, which is a group of related malignancies (cancers) that affect the lymphatic system...

Congenital Muscular Dystrophy

SummaryCongenital muscular dystrophy (CMD) is a general term for a group of genetic muscle diseases that occur at birth (congenital) or early during infancy. CMDs are...

Eosinophilic Esophagitis

Eosinophilic esophagitis (EoE) is a chronic disorder of the digestive system in which large numbers of a particular type of white blood cell called eosinophils are...

Familial Hypercholesterolemia

Summary Familial hypercholesterolemia (FH) is a diagnosis which refers to individuals with very significantly elevated low-density lipoprotein (LDL) cholesterol...

Familial Isolated Hypoparathyroidism

Familial isolated hypoparathyroidism is a group of rare genetic disorders characterized by parathyroid glands that do not produce or secrete enough parathyroid hormone to...

Gastroparesis

Gastroparesis (abbreviated as GP) represents a clinical syndrome characterized by sluggish emptying of solid food (and more rarely, liquid nutrients) from the stomach,...

Hypoparathyroidism

Hypoparathyroidism is a rare condition in which the parathyroid glands fail to produce sufficient amounts of parathyroid hormone or the parathyroid hormone produced lacks...

Mantle Cell Lymphoma

Mantle cell lymphoma (MCL) belongs to a group of diseases known as non-Hodgkin's lymphomas, which are related malignancies (cancers) that affect the lymphatic system...

Thyroid Cancer

Thyroid cancer (carcinoma) is cancer affecting the thyroid gland, a butterfly-shaped structure located at the base of the neck. The thyroid is part of the endocrine...

Primary Hyperparathyroidism

Primary hyperparathyroidism is a condition in which the parathyroid glands produce too much parathyroid hormone and the calcium level in the blood becomes elevated. The...


News & Blog Posts Results

Join the Rare Action Network

NORD Launches Rare Action Network

NORD Outlines Steps to Promote Innovative Drug Discovery, Development and Delivery for Americans with Rare Diseases

National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative "Call to Action" The National Organization for...

Fundraising

Most non-profits rely on in-kind donations and fundraising campaigns to sustain their operations and provide them with the means to grow. The role of your organization's...

NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy

NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication...

Taking Rare Action™ on the Road

Over the next few weeks, I will be driving across the country to meet with NORD members and Rare Action Network™ advocates in their community. All told, I will be...

Rare Action™ Road Tour, Atlanta, GA

Greetings from Atlanta, Georgia. I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of...

Rare Action™ Road Tour, Tallahassee, FL

Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee,...

Rare Action™ Road Tour, Houston, TX

Howdy from Houston, The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, "hey, lets just take some byways and...

Rare Action™ Road Tour, Oklahoma City, OK

Greetings from Oklahoma, The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts)....

Rare Action™ Road Tour, Denver, CO

Greetings from Denver, As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10...

Rare Action™ Road Tour, Salt Lake City, UT

Greetings from Salt Lake City, This is part 1 of 2 of two posts on SLC. Tomorrow I will post on our State Ambassador, Gina Szajnuk. Today, I'm happy to share a bit...

Rare Action™ Road Tour, Salt Lake City, UT

Greetings from Salt Lake City (Day 2), As promised, I'm happy to introduce you to NORD's State Ambassador for Utah, Gina Szajnuk. Say hello, Gina: "I am the...

Miss Pre-Teen Connecticut Visits NORD

Meet Irelynn! She is 11 years old and was recently crowned Miss Pre-Teen Connecticut. Her platform for pageants is pancreatic cancer and she has been raising awareness...

Urge Your U.S. Senators to Attend Sept. 16th Briefing on Neurological Disease Research

Invite your U.S. Senators to attend a briefing on the Advancing Research for Neurological Diseases Act (S. 849) on September 16 from 11:30 to 12:30 in the Senate Russell...

Download the State Progress Report

Download the State Progress Report here to begin driving progress for rare diseases in your state! Thank you for your support!

NORD Releases First-Ever State Progress Report for Rare Diseases

Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network With patient access to...

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

2015 was a bellwether year for the NORD public policy team and some exciting growth was seen that could not have come at a better time; the next few years will be some of...

CCHS Family Network

The CCHS Family Network (CCHSFN) is a voluntary, non-profit, self-help organization dedicated to providing support and information to families with children affected by...

RareAction Network℠ Releases April State Legislative Tracker

We are making progress throughout the country for the 1 in 10 Americans with rare diseases. Here is a list of legislative initiatives that NORD and our network...

Desiree Lyon Howe: 2016 Rare Impact Award Honoree

Desiree Lyon Howe lived for 10 years in excruciating pain before being diagnosed with Acute Intermittent Porphyria (AIP). She was finally diagnosed at the National...

RareAction Network℠ Releases May/June State Policy Legislative Tracker

RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is...

Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients

NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients. The Oregon legislature...

State Report Card to Help People with Rare Diseases

Washington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million...

Family Moves Across State Lines to Receive Better Access

Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational treatment, and a near-fatal infection. ...

Eleven Major Patient Groups Outline Joint Position on Health Care Reform

Washington, D.C., March 6, 2017 – A coalition of eleven nonpartisan patient groups today laid out a joint set of goals they want Congress to focus on as it considers...

NORD Names New Director of Membership

Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million...

NORD Rare Action Network℠ Releases Spring 2017 State Policy Legislative Tracker

NORD is pleased to share the Rare Action Network's Spring 2017 State Policy Legislative Tracker. This document shows, state-by-state, which legislation we are tracking...

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Update: June 29, 2017--Today, H 239, a bill that would establish a Rare Disease Adviosry Council and provide Pennsylvania's 1.2 million rare disease patients with a voice...

Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients

WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of...

NORD Rare Action Network℠ Releases Summer 2017 State Policy Legislative Tracker

NORD is pleased to share the Rare Action Network’s Summer 2017 State Policy Legislative Tracker. This document shows, state-by-state, which legislation we are tracking...

Beth Nguyen, R.N. - 2017 Rare Impact Award Honoree

2017 Honoree Rare Impact Awards Beth Nguyen, R.N. Mother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely. ...

Recap: NIH NCATS Day - Partnering with Patients for Smarter Science at the NIH

In advance of today's Members-Only Webinar with the Director of NIH NCATS, Dr. Christopher Austin, Swapna Kakani, a summer intern with NORD, wrote the article below...

Downloadable Hurricane Harvey Emergency Relief Resources

Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural...

Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit

Washington, D.C., November 20, 2017 – “Last week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs...

Join Us for Rare Disease Day®

Each year, individuals around the globe come together for one special...

Changing the Landscape of Rare Disease Research

*The following is a a guest blog posting by NORD's Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at...

35 Ways to Celebrate the 35th Anniversary of NORD

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease...

NORD Rare Action Network® 2018 State Report Card

Washington, DC, March 20, 2018—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million...

NORD Issues Statement Regarding Governor Bevin's Veto of Kentucky Senate Bill 7

Washington, D.C., April 11, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million...

NORD Shares News on 35th Anniversary Celebration Presenting the Rare Impact Awards

Washington, D.C., April 12, 2018—The National Organization for Rare Disorders (NORD) has announced the latest news regarding the upcoming 35th Anniversary Celebration...

TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by...

Patrick Dunegan: 2018 Rare Impact Award Honoree

Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the...

35 Ways and Growing: NORD's Service to the Rare Disease Community

For 35 years, NORD has been leading the fight to improve the lives of patients and families with rare diseases. We do this by supporting patients and organizations,...

Last Rare Disease Day Event of 2018 a Success in Pennsylania

*The following article ran 6/19/2018 via Pennsylvania Legislative Services, an online legislative research, tracking, media, and analysis service providing access to...

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease...

NORD Announces Honorees for 2019 Rare Impact Awards

Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be...

Living Rare Honorees

2020 Honorees A Lifetime Achievement Award being presented to Janet Woodcock, MD, Director, Center for Drug Evaluation and Research, US Food & Drug...

Deborah Skolaski: 2019 Rare Impact Award Honoree

Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the...

The Honorable Sarah Davis: 2019 Rare Impact Award Honoree

Representative Sarah Davis is a dedicated champion of the rare disease community in her home state of Texas. She is currently serving her fifth term as the State...

NORD's 2019 Living Rare, Living Stronger Weekend Highlights

We would like to extend our sincerest thanks to all those who joined us during the Living Rare, Living Stronger NORD Patient & Family Forum, June 21-23 in Houston....

2019 NORD Rare Summit to Feature Caregivers Who Have Moved from Inspiration to Action

Washington, DC, July 31, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million...

NORD's Rare Action Network Mobilized for a Successful Hill Day

On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol...

#NORDinthenews: NORD Summit content featured in two new articles

BioNews Service reporter Larry Luxner attended the 2019 NORD Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC in October, and has since written two...

Students for Rare Featured Student: Allison Herrity

Tell us a little bit about yourself! Where are you from? I’m Allison Herrity and I’m from Arlington, Virginia! Where do you attend school and what are...

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

Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders...

Head of the Herd: Bonnie Royster, CdLS Foundation

At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation Bonnie most frequently checks her… Facebook Bonnie...

NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare...

Rare Disease Day 2020 Advocacy Events Recap

In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare...

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

Head of the Herd: Michele Sloan, Foundation to Fight H-abc At the head of the herd is... Michele Sloan, Director, Foundation to Fight H-abc Michele most frequently...

Neurology Reviews and NORD Publish Annual Rare Neurological Disease Special Report

Parsipanny, NJ – Frontline Medical Communications (FMC) and the National Organization for Rare Disorders (NORD)® this week announced the release of the 6th annual Rare...

Update on NORD's Recent Advocacy Work on COVID-19 for the Rare Community

In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns...

Rare Action Network's Maria Bellefeuille Interviewed by Patient Empowerment Network Leading up to Living Rare Forum

Patient Empowerment Network recently interviewed Rare Action Network Volunteer State Ambassador for Illinois Maria Bellefeuille on being both a rare disease patient and...

NORD Releases Four Guiding Principles on Telehealth Issues

The COVID-19 pandemic has had a huge impact on the rare disease community. NORD has heard from countless patients over the last few months about how this crisis has added...

September is Newborn Screening Awareness Month

A Personal Reflection from Stephanie Cozine, Delaware Rare Action Network Ambassador Did you know that your baby is screened for different diseases depending on which...

2020 NORD Summit to Feature Leading Experts in Public Policy, Patient Advocacy, Rare Disease Research and Regulatory Science

Washington, DC, September 10, 2020--At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders...

NORD Joins Coalition Representing Millions of Patients to Release Telehealth Principles

For Immediate Release Major Groups Representing Millions of Patients Release Telehealth Principles September 24, 2020 – A coalition of organizations representing...

Newborn Screening: The HCP Perspective on the Importance of Confirmatory Testing and Collaboration

SCREENING NEWBORNS FOR RARE DISEASES: THE IMPORTANCE OF CONFIRMATORY TESTING AND COLLABORATION By José Abdenur, MD and Rebekah Bressi, CGC ”Newborn screening is...

Nebraska Medicaid Expansion Is Progress for Rare Disease Patients, Highlights Critical Need to Support Medicaid During COVID-19

Today, Nebraska’s Medicaid expansion begins to take effect. This milestone—two years in the making—means that thousands more low-income people, including many who...

STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD's COVID-19 Community Survey Report is...

The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

After more than a year of negotiations in Congress and advocacy from NORD and patient coalition partners, lawmakers on Capitol Hill have passed legislation to protect...


Organizations Results

National Lymphedema Network, Inc.

The National Lymphedema Network (NLN) strives to increase awareness of lymphedema and related disorders through education, and promote and support the availability of...

Rare Disease Ghana Initiative

Rare Disease Ghana Initiative (RDGI) is a registered Non-Governmental Organization in Ghana which is made up of a network of professionals, patients and...


Events Results

Working with Regulators: A Focus on the FDA

The Cancer Policy Institute at the Cancer Support Community in partnership with the American Cancer Society Cancer Action Network, COPD Foundation, Friends of Cancer...

WEBINAR: In-Depth look at the 2016 NORD State Policy Report Card

Please join NORD Rare Action Network team Tuesday, January 24, 2017 at 3:00pm EST for a webinar to take an in-depth look into the recently published 2016 state policy...

Mississippi Rare Disease Day 2019

Please join Mississippi Rare Action Network for Rare Disease Day Advocacy Event on February 19, 2019 from 8:00am-12:00pm at the Mississippi State Capitol, West Wing, 400...

Washington Rare Disease Day 2019

Please join Washington Rare Action Network for Rare Disease Day Event on February 28, 2019 from 12:00pm-1:00pm at the Washington State Campus, Spokane Campus, Room SAC20,...

Connecticut Rare Disease Day 2019

Please join Connecticut Rare Action Network for Rare Disease Day Advocacy Event on February 28, 2019 from 8:30am-11:00am at the Connecticut State Capitol Legislative...

Georgia Rare Disease Day

Please join Georgia Rare Action Network for Rare Disease Day Advocacy Event on Friday, February 22, 2019 from 8:30am-11:00am at the Georgia State Capitol, South Wing, 206...

Illinois Rare Disease Day 2019

Please join Illinois Rare Action Network for Rare Disease Day Advocacy Event on February 27, 2019 in Springfield, IL. 10am-11:30am: Breakfast and Advocacy Training...

Kentucky Rare Disease Day 2019

Please join Kentucky Rare Action Network for Rare Disease Day Advocacy Event on Wednesday, February 27, 2019 from 12:30pm-1:30pm at the Kentucky State Capitol, 700...

Maryland Rare Disease Day 2019

Please join Maryland Rare Action Network for Rare Disease Day Advocacy Event on Thursday,February 28, 2019 from 6:00pm-8:00pm at Bernard W. Brown Community Center, 629 N....

Michigan Rare Disease Day 2019

Please join Michigan Rare Action Network for Rare Disease Day Advocacy Event on Thursday, March 7, 2019 from 10:30am -12:00pm at the Radisson Hotel Lansing at the...

New Hampshire Rare Disease Day 2019

Please join New Hampshire Rare Action Network for Rare Disease Day Advocacy Event on March 7, 2019 from 11:00am-2:0pm at New Hampshire State Capitol, Cafeteria, 107 N...

Minnesota Rare Disease Day 2019

Please join Minnesota Rare Action Network for Rare Disease Day Advocacy Event on March 11, 2019 from 1:00pm-4:00pm at Minnesota State Capitol, Rotunda, 75 Rev Dr Martin...

New Jersey Rare Disease Day 2019

Please join New Jersey Rare Action Network for Rare Disease Day Advocacy Event on March 11, 2019 from 8:30am-3:00pm. 8:30am: New Jersey State Museum, Main Room, 205 W...

Ohio Rare Disease Day 2019

Please join Ohio Rare Action Network for Rare Disease Day Advocacy Event on February 28, 2019 from 10:00am-2:00pm at the Ohio State House, Governor Thomas Worthington...

Oregon Rare Disease Day 2019

Please join Oregon Rare Action Network for Rare Disease Day Advocacy Event on March 7, 2019 from 8:00am-2:00pm at the World Trade Center Portland, 26 SW Salmon St,...

Pennsylvania Rare Disease Day 2019

*NOTE: This event is in Spring 2019* Please join Pennsylvania Rare Action Network for Rare Disease Day Advocacy Event Tuesday, May 7, 2019 10:00am at the Pennsylvania...

South Carolina Rare Disease Day 2019

Please join South Carolina Rare Action Network for Rare Disease Day Advocacy Event on March 1, 2019 from 9:00am-3:00am at the Medical University of South Carolina,...

Wisconsin Rare Disease Day 2019

Please join Wisconsin Rare Action Network for Rare Disease Day Advocacy Event on Saturday, March 2, 2019 from 11:00am-2:00pm at the Zablocki Pavilion, 3717 W. Howard...

RP - Resilient with Purpose

A global call to action for relapsing polychondritis (RP) patients to proudly participate and #ShowYourRare as RPASF rallies our growing community of patients, family...

Colorado Rare Disease Day 2020

Colorado Rare Disease Day 2020 Presented by Colorado Rare Action Network and Colorado Rare Thursday, February 27, 2020 from 8:30am-2:00pm Colorado State Capitol...

Connecticut Rare Disease Day 2020

NORD Connecticut Rare Action Network Rare Disease Day 2020 Friday, February 28, 2020 at 8:00a.m. -10:30a.m. Connecticut State Legislative Office Building, 300 Capitol...

Arkansas Rare Disease Day 2020

Arkansas Rare Action Network Rare Disease Day Saturday, February 29, 2020 Arkansas College of Osteopathic Medicine, 7000 Chad Colley Blvd, Fort Smith, AR 72916 Please...

Los Angeles, California Rare Disease Day 2020

California Rare Action Network Rare Disease Day 2020 Sunday, March 1 at 12:30pm Los Angeles Clippers present NORD as Non-Profit of the game at the Staples Center, 1111 S...

Tucson, Arizona Rare Disease Day 2020

Tucson, Arizona Rare Disease Day Saturday, February 29, 2020 Brought to you by MECP2 Duplication Foundation and Arizona Rare Action Network Tuscon Children’s Museum,...

Wisconsin Rare Disease Day 2020

Wisconsin Rare Disease Day 2020 Saturday, February 29, 2020 from 12:00pm-3:00pm Gardner Room” at the Wehr Nature Center, 9701 W. College Avenue, Franklin, WI 53132...

Kentucky Rare Disease Day 2020

February 27, 2020 from 10:30am-2:00pm Kentucky State Capitol, 700 Capitol Avenue SW, Frankfort, KY 40601 Please join Kentucky Rare Action Network patients, families,...

Massachusetts Rare Disease Day Community Event 2020

Wednesday, March 4, 2020 from 6:00pm – 8:00pm The Pollard Library, 401 Merrimack St, Lowell, MA 01852 Massachusetts Rare Action Network invites you to connect...

Oakland, California Rare Disease Day 2020

Ccccccccccccckc Sunday, March 1, 2020 from 1:00pm-4:00pm Brought to you by the California Rare Action Network, Myotonic and CalRare. Join patients, families,...

Color Wars for Rare at Northern Middle School for Rare Disease Day

Student Body President Emma Southard, with the Student Government Association (SGA), will lead students and faculty members in a "Color Wars for Rare." 6th grade...

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Delaware

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Florida

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Ohio

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Texas

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – California

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Kentucky

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Arkansas

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Maryland

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Connecticut

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team.

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – New Jersey

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Virginia

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Illinois

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – New York

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Idaho

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Iowa

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Nevada

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Colorado

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Missouri

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Indiana

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Massachusetts

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Wisconsin

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Georgia

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – North Carolina

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Tennessee

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Rare Action Network (RAN) COVID-19 Virtual Discussion Group – Oklahoma

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD’s Policy team. Register

Texas Rare Disease Day Virtual Event

Texas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Texas...

California Rare Disease Day Virtual Event

California Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Ohio Rare Disease Day Virtual Event

Ohio Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Ohio...

West Virginia Rare Disease Day Virtual Event

West Virginia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

North Carolina Rare Disease Day Virtual Event

North Carolina Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Colorado Rare Disease Day Virtual Event

Colorado Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Nevada Rare Disease Day Virtual Event

Nevada Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Nevada...

New Hampshire Rare Disease Day Virtual Event

New Hampshire Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Virginia Rare Disease Day Virtual Event

Virginia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Kansas Rare Disease Day Virtual Event

Kansas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Kansas...

Indiana Rare Disease Day Virtual Event

Indiana Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Indiana...

Oklahoma Rare Disease Day Virtual Event

Oklahoma Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

New York Rare Disease Day Virtual Event

New York Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate New...

South Carolina Rare Disease Day Virtual Event

South Carolina Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Arkansas Rare Disease Day Virtual Event

Arkansas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Louisiana Rare Disease Day Virtual Event

Louisiana Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Delaware Rare Disease Day Virtual Event

Delaware Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

New Jersey Rare Disease Day Virtual Event

New Jersey Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate New...

Maine Rare Disease Day Virtual Event

Maine Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Maine...

Florida Rare Disease Day Virtual Event

Florida Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Florida...

Tennessee Rare Disease Day Virtual Event

Tennessee Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...

Georgia Rare Disease Day Virtual Event

Georgia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Georgia...

Connecticut Rare Disease Day Virtual Event

Connecticut Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate...