NORD's Senior Director of Policy & Regulatory Affairs, Karin Hoelzer, will speak at this Pediatric Inclusion in #ClinicalTrials Roundtable about "Current Congressional Deliberations" at 11:30 AM ET, July 16. Register now to tune in virtually or attend in person in DC next Tuesday: https://lnkd.in/eW4Cnh_5 Hosted by NORD Member the Friedreich's Ataxia Research Alliance (FARA) and Leavitt Partners.
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 32,365 followers
Alone we are rare. Together we are strong.®
About us
The National Organization for Rare Disorders, a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 330 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services. NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products. NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). All NORD programs are focused on one ultimate goal -- to improve the lives of individuals and families affected by rare diseases. NORD is the official sponsor of Rare Disease Day in the US, an observance day held on the last day of February each year worldwide. Its goals are to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, visit rarediseaseday.us. To learn more please visit the NORD website at www.rarediseases.org. You can also follow NORD on Twitter at @RareDiseases.
- Website
-
http://www.rarediseases.org
External link for National Organization for Rare Disorders
- Industry
- Non-profit Organizations
- Company size
- 51-200 employees
- Headquarters
- Danbury, CT
- Type
- Nonprofit
- Founded
- 1983
- Specialties
- rare diseases, patient assistance, patient support, rare disease information, advocacy, information for medical professionals, research, online communities, and orphan diseases
Locations
-
Primary
55 Kenosia Avenue
Danbury, CT 06810, US
-
1779 Massachusetts Avenue
Suite 500
Washington, DC 20036, US
-
1900 Crown Colony Drive, 4th floor
Quincy, MA 02169, US
Employees at National Organization for Rare Disorders
-
Lynn Julian
Resilience Speaker / Boston Marathon Bombing Survivor / Author / Actress / Patient Advocate / Consultant / Clinical Trials / Rare Disease / Migraine…
-
Ramon L.
Senior Software Engineer
-
Sarah Krüg
-
Thomas Bartlett
Myasthenia Gravis Patient Digital Technology Advisor/MGFA National Patient Ambassador - Research and MG Registry/Life Science Technology Advisor
Updates
-
NORD is proud to offer a new #ALS Travel & Lodging Assistance Program, providing financial aid for travel to medical appointments for individuals with #AmyotrophicLateralSclerosis. Email ALS@rarediseases.org or apply online: https://bit.ly/3RYFZLg
-
-
The SKDEAS Family Meeting on July 12-13 is a pivotal event uniting the #SKDEAS (Skraban-Deardorff syndrome) community, with in-person and livestream participation options. RSVP to discover the latest in support and research: skdeas.org/family-meeting
-
The 2024 #NORDSummit agenda has officially dropped. Which speakers and sessions are you most excited for? https://lnkd.in/dt_C4Pm4 👀 - Can We Make #GeneTherapy More Accessible? - Can #AI Help the Rare Community NOW? - What Strategies Will Move the Needle Most for #RareDiseases? And so much more! Join us in Washington, DC this October 20-22.
-
-
Only 1 person in the U.S. is known to have #NLSDM, neutral lipid storage disease w/ myopathy. Her name is Gabby! We profiled Gabby for #RareDiseaseDay; she's 1 of ~100 NLSD-M patients worldwide. Read her newest feature in Patient Worthy: https://lnkd.in/e_5xtH9M #NeutralLipidStorageDisease #Myopathy #GabbysWonderfulWorld
Why Gabby Raises NLSD-M Awareness - Patient Worthy
patientworthy.com
-
The National Tay-Sachs & Allied Diseases Association is seeking an experienced and motivated #DevelopmentDirector to lead their fundraising efforts and drive development strategies. Interested? Visit www.ntsad.org. #TaySachs #Hiring #Development
National Tay-Sachs & Allied Diseases Association - Home
https://ntsad.org
-
Are you or a loved one living with Waldenstroms macroglobulinemia? Do you need financial help to attend medical appointments? NORD is here for you. Apply for assistance here: https://bit.ly/4curRS7 or email IWMFTravel@rarediseases.org Thank you the International Waldenstrom's Macroglobulinemia Foundation (IWMF) for providing funding for this program! #WaldenstromsMacroglobulinemia #WaldenstromMacroglobulinemia
-
-
Look at these incredible highlights from last month's Living Rare, Living Stronger Patient & Family Forum in Los Angeles! Read a recap of this year's #LivingRareForum and watch recordings of all the sessions: https://bit.ly/3zqJlA6 #RareDisease #RareDiseases #NORD #LivingRare
Highlights from the 2024 Living Rare, Living Stronger Patient & Family Forum
-
National Organization for Rare Disorders reposted this
Opinion: The successful rare pediatric disease priority review voucher must be extended to give hope — and hopefully effective treatments — to children living with rare diseases. https://trib.al/FREcnQr
The rare pediatric disease voucher program creates new treatments. I have new data to prove it
https://www.statnews.com
-
NORD CEO Pamela Gavin shares new data on the Rare Pediatric #PRV program in STAT: 53 vouchers awarded in its first 12 years yielded 39 #RareDisease treatments for kids, of which 36 are the first for that disease: https://lnkd.in/eVaBYnTx
The rare pediatric disease voucher program creates new treatments. I have new data to prove it
https://www.statnews.com