Is #GeneticTesting right for you? What are the benefits and limitations of genetic testing for specific #RareDiseases? Get answers from our 2024 #LivingRareForum panel: https://lnkd.in/e8gEFrAg Featuring NORD Board Member and Founder of The Mighty, Mike Porath, along with experts from three different NORD Rare Disease Centers of Excellence: Dr. Deb Regier, Director of the Rare Disease Institute at Children's National Hospital; Dr. Stanley F. Nelson of David Geffen School of Medicine at UCLA and UCLA Health; and Rebekah Barrick of CHOC Children's. #GeneticCounseling #Genetics #RareDisease
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 32,496 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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Yesterday marks an exciting milestone for millions of Americans in the #RareDisease community! A BIG congratulations to the FDA on the #FDA Rare Disease Innovation Hub! Drug development for #RareDiseases is complex and challenging, but rapid advancements in science, technology, and medicine make innovation more crucial than ever. NORD is thrilled to see the Hub take flight and is excited to help support this new entity and its co-pilots, Peter Marks and Patrizia Cavazzoni. https://lnkd.in/egJKYwvs #PatientAdvocacy #DrugDevelopment #RegulatoryScience #RareDiseaseHub #CDER #CBER
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National Organization for Rare Disorders reposted this
The #FDA is seeking input from patients & their care partners on safety considerations for approved #genetherapies for rare genetic diseases & participation in long-term studies after receiving gene therapy. Join us on 9/20 to share your perspectives: https://bit.ly/3XUEQrP
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NORD's #PKU Patient Assistance Program offers financial support for out-of-pocket healthcare costs related to #phenylketonuria care and treatment. Email pku@rarediseases.org or apply online here: https://bit.ly/4czUzRE
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Let's talk about sexual and reproductive health issues in #RareDisease. From having kids to having fun, what should you keep in mind? Our 2024 #LivingRareForum panelists (and guests) had a lot to say. Watch: https://lnkd.in/eFNahb3M Feat. Dr. Michelle Fynan, André Marcel Harris, MSW of SICKLE CELL ASSOCIATION OF HOUSTON, Esmeralda Vazquez of Genentech, and Taylor Kane of Remember The Girls
Sexual and Reproductive Health Issues in Rare Disease - 2024 NORD Living Rare Forum
https://www.youtube.com/
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#NewbornScreening panels can vary from state to state and are updated every year. So what is the current state of newborn screening in America today? Our 2024 #LivingRareForum panelists discussed this: https://lnkd.in/emCAt_iN Feat. ALD Alliance/Aidan Jack Seeger Foundation, Speragen #RareDisease #RareDiseases
Newborn Screening in America - 2024 NORD Living Rare Forum
https://www.youtube.com/
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Make your mark on the future of #PNH research by enrolling in the Global PNH Patient Registry! Participation can be done at your own pace and is open to anyone with a PNH diagnosis, here: https://pnh.iamrare.org Brought to you by NORD and the Aplastic Anemia & MDS International Foundation for patients with #ParoxysmalNocturnalHemoglobinuria
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Tomorrow at 11:30 AM! Watch NORD Sr. Director of Policy & Regulatory Affairs, Karin Hoelzer, share updates from Congress at this Pediatric Inclusion in #ClinicalTrials Roundtable. Register to tune in virtually: https://lnkd.in/eW4Cnh_5 Hosted by NORD Member the Friedreich's Ataxia Research Alliance (FARA) and Leavitt Partners.
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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.
Health Equity for the Whole Rare Disease Community - 2024 NORD Living Rare Forum
https://www.youtube.com/
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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/