The NORD Breakthrough Summit is where biotech, pharma and medical device companies convene with rare disease patients, academic researchers, and FDA and NIH representatives. Don’t miss this year’s event! Register now: https://nordsummit.org/
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 33,267 followers
Alone we are rare. Together we are strong.®
Über uns
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
- Industrie
- Non-profit Organizations
- Größe des Unternehmens
- 51-200 Mitarbeiter
- Hauptsitz
- Danbury, CT
- Typ
- Nonprofit
- Gegründet
- 1983
- Spezialitäten
- rare diseases, patient assistance, patient support, rare disease information, advocacy, information for medical professionals, research, online communities, and orphan diseases
Standorte
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Primäre
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 Crisci
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…
Aktualisierungen
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Join the MPN Research Foundation "MPN Pathways: Empowered Voices in Research" virtual certificate program, equipping #MPN patients & caregivers to impact research! First webinar is Sept 12 at 5pm Central. RSVP: https://bit.ly/3WYvM4d #PolycythemiaVera #myelofibrosis #thrombocythemia
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Living with #IgANephropathy or caring for someone with #IgAN? The National Organization for Rare Disorders can help you pay for your medical care. Apply here: https://bit.ly/3B4ILsr or email [email protected] Provided in partnership with NephCure!
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NORD offers financial assistance to patients seeking medical care for Neurofibromatosis 1 (NF1) in partnership with RASopathies Network USA, Children's Tumor Foundation & Neurofibromatosis Network. Apply: https://bit.ly/3AkLU7g Or email [email protected] #NF1 #Neurofibromatosis #Neurofibromatosis1
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Jill Pollander, Vice President of Patient Services at NORD, gave a great overview of NORD's work and how we partner with patient organizations at a meeting with the National Ataxia Foundation. Watch it: https://lnkd.in/enMrxPkB #RareDiseases #NORD #Ataxia #PatientServices
NORD: Alone we are rare, Together we are strong
https://www.youtube.com/
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Registration is open for The Desmoid Tumor Research Foundation (DTRF) Desmoid Tumor Research Workshop on Sept. 20 in Houston, TX and virtually! Attend this critically important, collaborative event for researchers and medical professionals in the field of #Desmoid tumor care: https://bit.ly/2024tww #DesmoidTumor #DesmoidTumors #Fibromatosis #AggressiveFibromatosis #TogetherWeWillWeekend
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Income inequality is a #RareDisease issue. This finding from our survey with the Rare Disease Diversity Coalition of underrepresented rare patients should inspire action from across the #healthcare landscape. Learn more: https://bit.ly/3Zkiq43
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The bill to create a Rare Disease Advisory Council (#RDAC) in California has officially landed on Governor Newsom's desk! The last step is his signature. ✍️ It's time for #California, the nation's most populous state, to join the majority of states that have created #RDACs to represent the needs of people with #RareDiseases like these advocates who championed this bill! Read the press release from bill sponsor and #RareDisease advocate Assemblymember Rick Chavez Zbur: https://bit.ly/47gRofu
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#Paralympic Dressage competitor Sydney Collier is one of less than 100 people with #WyburnMasonSyndrome, and one of the oldest ever. Diagnosed at age 7, she wasn't expected to live longer. Therapeutic horseback riding changed her trajectory. Sydney (@sydsparaquest on IG) went on to compete in the Rio #Paralympics with her horse, Rosie, which earned her an invitation to the White House. Now, she's written a new book! Read her story on the NORD blog: https://lnkd.in/ewJSENAj
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What do the present and future of investment in #RareDisease treatments look like? David Scheer will lead a panel discussion on this topic at this year's #NORDSummit! Register here: https://nordsummit.org/ Featuring experts and leaders in orphan product investment from Rallybio, Taysha Gene Therapies, Sofinnova Investments, and OrbiMed.