"Time is short. Congress must act now to renew the #PRV program creating a future where no child’s potential is destroyed by a #RareDisease." - Dr. Matthew Winton Read more in Patient Worthy: https://lnkd.in/eF-F63sA
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 32,892 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
Speaker - Myasthenia Gravis Patient Advocate. Myasthenia Gravis Patient Digital Technology Advisor/MGFA National Patient Ambassador - Research and MG…
Updates
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A collaborative Trajectory Analysis Project (cTAP) & CureDuchenne study indicates #DMD clinical trial enrollment criteria should expand beyond ambulatory status to increase patient recruitment and eligibility: https://prn.to/4ciwSw9 #MuscularDystrophy #Duchenne #DuchenneMuscularDystrophy #ClinicalTrials #Accessibility
cTAP Study Indicates Duchenne Muscular Dystrophy Clinical Trial Enrollment Criteria Should Expand Beyond Ambulatory Status
prnewswire.com
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NORD #RareImpactAward winner and Director of the NORD #RareDisease Center of Excellence at Johns Hopkins Medicine, Dr. Ada Hamosh, was just honored by the American Society of Human Genetics for her pioneering work creating tools that advance genetic research! Other 2024 #ASHG awardees include experts from NORD Rare Disease Centers of Excellence at UW Medicine, Brigham and Women's Hospital, UCSF Benioff Children's Hospitals, University of Miami Miller School of Medicine and Baylor College of Medicine. Congratulations to these awardees! #Genetics #GeneticsResearch #GeneticDiseases
ASHG is thrilled to announce the recipients of the 2024 Professional Awards 🏆 Learn more about the winners: https://lnkd.in/ejdDM-BM These honors celebrate outstanding scientific achievements as well as significant contributions to genetics & genomics education, mentorship, & advocacy. 🎉 Congratulations to all! 🎉
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When you or a loved one have a rare, #undiagnosed disease, NORD and our Rare Disease Centers of Excellence and partners can help. This story references one of those centers, Children's Hospital of Philadelphia. It also highlights a resource for undiagnosed individuals, the Undiagnosed Diseases Network (UDN). NORD is proud to help you obtain a diagnosis, including with our undiagnosed Patient Assistance Program that anyone whose case has been accepted by the Undiagnosed Diseases Network is eligible to apply for. https://lnkd.in/eSRtNzXB
When a child is mysteriously and seriously ill, here are places to turn
washingtonpost.com
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Are you 1 of the 67% of Americans without a will? It's National #MakeAWillMonth! NORD & FreeWill equip the #RareDisease community to look after their loved ones and make the most meaningful donations of their lives. Start yours: https://bit.ly/3ynt7aR
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Tomorrow at 9 AM Eastern! Watch this live #CME presentation of the latest research and recommendations on #BeckerMuscularDystrophy, including how to differentiate it from #Duchenne muscular dystrophy. Watch here: https://lnkd.in/eCJjr2VY #MuscularDystrophy #MedicalEducation #Becker
LIVE on 8/7: Don't miss this important discussion on the mechanisms of muscular injury in Becker #musculardystrophy (#BMD) & the role of dystrophin, as well as the latest data on emerging agents ✅ Register here 👉 https://bit.ly/4d7RBUK 👥 Speakers: Aravindhan Veerapandiyan, MD & Luca Bello, MD, PhD 🏷️ #FreeCME #CME #MedicalEducation #MedEd #RareDisease #NORD #MDA National Organization for Rare Disorders Muscular Dystrophy Association
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One of our 2024 #RareImpactAwards Community Champions, Jana Monaco, was covered in the Winchester Star, where she recounts her family's story and her many accomplishments: making #Virginia a great state for newborn screening, making medical formula less expensive, and her upcoming charity golf tournament benefitting Children's National Hospital, a NORD #RareDisease Center of Excellence! Read about Jana: https://bit.ly/3WxjdeN - #NewbornScreening #MedicalFormula #MedicalFoods #CharityGolf #IsovalericAcidemia #IVA
Shared diagnosis, different lives: How a Frederick County mother launched into a world of advocacy
winchesterstar.com
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Mary Nadon Scott, an incredible NORD and #FriedreichsAtaxia advocate, is making a big impact in #Vermont with our RDAC coalition! Mary has spread the word with flyers at medical centers, pharmacies, libraries and local businesses and sent messages to elected officials online. Let’s give her a huge shoutout and join her in making a difference! 💪✨ Want to get involved in establishing a #RareDisease Advisory Council in your state? Email rdac@rarediseases.org to join your state's #RDAC coalition and be part of the change! 🦓 You can also download your own flyers to print and share here: https://bit.ly/3WRc7mD
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NORD proudly offers premium, copay and medical assistance for patients with #FabryDisease to access the medical care they need. Apply online: https://bit.ly/3Ypx21x or email Fabry@rarediseases.org #Fabry
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Today is World NTM Awareness Day! 🌍 Join NORD and NTM Info & Research in spreading awareness about Nontuberculous Mycobacterial (#NTM) lung disease. Visit worldntmday.org today. #WorldNTMDay #WorldNTMDay2024
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