What does #HealthEquity for EVERYONE in the #RareDisease community look like? Who has been left out and needs to be included? What changes need to be made now? Our 2024 Living Rare Forum panelists discussed it: https://lnkd.in/ecKyM2c4 Featuring speakers from Dreamsickle Kids Foundation,Inc, Hemophilia Foundation Southern California, and more.
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 32,434 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
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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
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Primary
55 Kenosia Avenue
Danbury, CT 06810, US
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1779 Massachusetts Avenue
Suite 500
Washington, DC 20036, US
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1900 Crown Colony Drive, 4th floor
Quincy, MA 02169, US
Employees at National Organization for Rare Disorders
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Lynn Julian
Resilience Speaker / Boston Marathon Bombing Survivor / Author / Actress / Patient Advocate / Consultant / Clinical Trials / Rare Disease / Migraine…
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Ramon L.
Senior Software Engineer
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Sarah Krüg
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Thomas Bartlett
Myasthenia Gravis Patient Digital Technology Advisor/MGFA National Patient Ambassador - Research and MG Registry/Life Science Technology Advisor
Updates
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Navigating #HealthInsurance can be the worst part of the care process. With a #RareDisease, it can be even harder. Our #LivingRareForum panelists discussed How to Overcome Insurance Barriers with a Rare Disease: https://bit.ly/3zLEglU
Overcoming Insurance Barriers with Rare Disease - 2024 NORD Living Rare Forum
https://www.youtube.com/
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Should you get genetic testing even if you already have a diagnosis? The answer is yes! Watch this video to find out why. For an accompanying infographic and Spanish-language versions, visit our website: https://bit.ly/3Wdg3hf Video made in partnership with Osmosis.org from Elsevier and National PKU Alliance. #RareDisease #RareDiseases #GeneticTesting #GeneticCounseling #Genetics
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The International Pemphigus Pemphigoid Foundation is excited to announce that registration is open for the 2024 IPPF Patient Education Conference in Newport Beach, California! Learn more and register today: https://lnkd.in/gx8DTigb #Pemphigus #Pemphigoid
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Announcing a new NORD patient assistance program for #MultifocalMotorNeuropathy, or #MMN, providing financial support with out-of-pocket medical expenses. Email MMN@rarediseases.org or apply online here: https://bit.ly/460ggI6
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Join Adrenal Insufficiency United and Danny's Dose at the Knoxville Zoo in Tennessee on July 27 for their "Family Fun and Emergency Preparedness Education" Event! Register for free here: https://lnkd.in/ecnWwx87 #Knoxville #Tennessee #BleedingDisorder #BleedingDisorders #Hemophilia #AdrenalInsufficiency #EmergencyMedicalServices #EMS
Family Fun & Emergency Preparedness
https://www.jotform.com
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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.
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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
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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
Family Meeting: Unite & Learn with SKDEAS Community
skdeas.org
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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.
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