Carlos Ortiz has become a passionate advocate for his father and all others living with generalized #MyastheniaGravis (MG). Please read his story today: https://bit.ly/3WeVu2V Then consider participating in the Myasthenia Gravis Foundation of America, Inc. MG Walk as a walker or donor! Carlos's team has met their goal, but the MG Walk overall needs YOUR support! ➡️ https://bit.ly/4cSvNMp
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
Updates
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There's major overlap between the rare community and the #disability community. Our joint survey with the Rare Disease Diversity Coalition shows the profound effects of life with a #RareDisease. As we mark today's anniversary of the #AmericansWithDisabilitiesAct (#ADA), think about how we might overcome these barriers to reduce the isolation that people with #disabilities are made to feel. What do YOU need to be included? Take a chance and ask for it. We've got your back. What can YOU do to help others be included? Make a plan and share it. We're all in this together.
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Today is the 34th anniversary of the Americans with Disabilities Act (#ADA), the landmark civil rights legislation that laid the foundation for a more accessible society, which we are still fighting for today. Let this be a reminder that people with #disabilities have always been loud, powerful advocates for change! From the Orphan Drug Act to the ADA to today's movement for inclusive and equal opportunities at work and in public life, people with disabilities are the drivers of our own change. #TogetherWeAreStrong
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National Organization for Rare Disorders reposted this
I just finished the course, An Introduction to Rare Diseases on NORD’s RareEDU! Check it out at learn.rarediseases.org
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Did you miss our webinar, "Why Saving the Rare #Pediatric Disease Priority Review Voucher Program Matters"? Watch it here: https://lnkd.in/duHnaXyF For our #ChildrensHealth, Congress MUST reauthorize this program by September 30!
Why Saving the Rare Pediatric Disease Priority Review Voucher Program Matters (Webinar)
https://www.youtube.com/
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Saturday is the first "Inclusive Day of Play" in #Minnesota! Gillette Children's created a guide to all 31 #disability-inclusive playgrounds in the state - perfect for kids with rare disorders to socialize and have fun: https://yhoo.it/4cePxsR
Minnesota's first ‘Inclusive Day of Play' will be Saturday
yahoo.com
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Happening today! Don't miss this #CME opportunity on #RettSyndrome, part of a series by NORD and Medlive - A PlatformQ Health Brand.
TODAY at 3PM ET! 👥 Join us, National Organization for Rare Disorders, & International Rett Syndrome Foundation for this LIVE roundtable discussion on integrating new therapies for #Rettsyndrome into community-based care settings and how to refer patients to centers of excellence (#CoE) 👉 https://bit.ly/3Wl1oPX 🏷️ #FreeCME #CME #MedicalEducation #MedEd #IRSF #NORD
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National Organization for Rare Disorders reposted this
Communications intern at Cleveland Clinic | Incoming MPH student, GWU Milken Institute School of Public Health | Vanderbilt University alumnus
Highly recommend taking the National Organization for Rare Disorders' new free course, An Introduction to Rare Diseases, if you're interested in public health or medicine. A thoughtfully laid out course about an important but often overlooked topic – I learned a ton! https://lnkd.in/edBhczPh
An Introduction to Rare Diseases
https://learn.rarediseases.org
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NORD offers financial assistance for patients with #CTX, or #CerebrotendinousXanthomatosis, to help pay for out-of-pocket medical costs. Email CTX@rarediseases.org or apply online here: https://bit.ly/3LdBIzJ
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National Organization for Rare Disorders reposted this
STANDING ROOM ONLY! It was amazing to see so much support yesterday for the #raredisease community at our #NORD, the National Organization for Rare Disorders Congressional Briefing. It really is a testament to how vitally important the #rarepediatricdisease #priorityreviewvoucher #PRV program is to our community! And what devastating effect it would have if #Congress let the program expire on *September 30, 2024* - more than 500(!) #drugcandidates are in the pipeline for #rare #pediatric diseases (based on rare pediatric disease designation), many of whom have *no* FDA approved treatment options. As one of the panelists so aptly said yesterday, we simply cannot let these #drugdevelopment programs die on the vine for lack of economic incentives - in rare diseases, when drug development programs die, patients die. A big thank you to our panelists Maynard Friesz, Michelle Werner, and Paul Melmeyer for sharing their perspectives and experiences as #patientadvocates, #rarediseasepolicy #experts and #biopharmaceutical leaders, to Sara Maskornick for wonderful opening remarks, and to Leslie Gordon for allowing us to share a video message explaining how the #PRV program continues to impact the trajectory for patients and families affected by #progeria. And a HUGE thank you to the fantastic #NORD staff who made all of this possible - Hayley M., who masterfully summarized our new #NORD evaluation of the program' impact that just came out yesterday as well as Supraja Sowmiyanarayanan, Amanda Mannix, Connor Rice, Mason Barrett, Heidi Ross, and many more!
Yesterday in DC, NORD held a Congressional briefing to explain the importance of reauthorizing the Rare #Pediatric Disease Priority Review Voucher program to our elected leaders. Learn more and take action: https://bit.ly/4bCldZU #PriorityReviewVoucher #PriorityReviewVouchers #PRV #PRVs #ChildrensHealth #RareDisease #RareDiseases
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