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Your Every Life Update!
Your Every Life Update!
The Every Life Foundation is a national organization serving people with rare diseases in the United States since 2009
The Every Life Foundation is a national organization serving people with rare diseases in the United States since 2009
Exciting Newborn Screening Update!
Exciting Newborn Screening Update!
The U.S. Department of Health and Human Services (HHS) has added Duchenne muscular dystrophy (Duchenne) and Metachromatic Leukodystrophy (MLD) to the federal Recommended Uniform Screening Panel (RUSP). This is a significant milestone for public health, opening the door to more timely interventions and optimized health outcomes for children affected by these rare diseases.
We congratulate the rare disease advocates and public health officials who worked tirelessly to make today’s progress possible—and we especially recognize and honor the Duchenne and MLD communities and the patient advocacy organizations who never gave up, especially the condition nominators: Parent Project Muscular Dystrophy, MLD Foundation, and Muscular Dystrophy Association.
Thank you to Secretary Kennedy and HHS for demonstrating a strong commitment to newborn screening and the federal RUSP. LEARN MORE
#RAREis Scholarship Returns in 2026
#RAREis Scholarship Returns in 2026
Thanks to the support of Amgen, the #RAREis Scholarship will be offered in 2026 for individuals ages 17+ with a rare disease who are enrolling in undergraduate or graduate school, trade school, or any accredited course in Fall 2026.
The application will be open from March 17 through April 28, 2026 (3 PM CT). Up to 58 $5,000 scholarships will be awarded for the fall semester. LEARN MORE
News from NORD!
News from NORD!
NORD was created in 1983 as an organization to serve people with rare diseases and their caregivers.
NORD was created in 1983 as an organization to serve people with rare diseases and their caregivers.
What Is the NORD® Rare Disease Database?
What Is the NORD® Rare Disease Database?
The NORD Rare Disease Database is an inclusive and comprehensive list of rare diseases based on information from established rare disease ontologies and it is an ongoing project made possible by a close collaboration with MONDO, Orphanet, and Online Mendelian Inheritance in Man (OMIM). The NORD Rare Disease Database includes:
NORD Rare Disease Reports: These reports provide detailed information about symptoms, causes, diagnosis, treatments, clinical trials, and support resources, including patient advocacy organizations. Each report includes references from textbooks, articles, websites, and government agencies.
Rare diseases that do not have a NORD Rare Disease Report have information from well–respected sources. Some of these additional resources have technical language, so you may want to talk to your healthcare provider about it.
NORD also provides many reports in Spanish, and additional translations can be requested by contacting us at nordcoe@rarediseases.org.
What is a Rare Disease
What is a Rare Disease
A rare disease is a disease, disorder, illness or condition that affects fewer than 200,000 Americans. There are over 10,000 rare diseases that together affect more than 30 million Americans. NORD is dedicated to the identification, treatment, and cure of these diseases through comprehensive education, advocacy, research, and service programs.
Need more help?
Need more help?
If you cannot find the information you need, our Information and Resource Services team is always available to help, and our team can be reached by phone at (800) 469-0283 or email: informationservices@rarediseases.org.
This page contains links to privately run organizations serving people with rare diseases, their families, healthcare providers. They are provided as an information service only. Being included or not on this list is not a reflection on any organization. If you have feedback on this list you can email us at info@nysrdc.org
The New York State Bleeding Disorders Coalition is a group of patient organizations and treatment providers. https://www.nysbd.org/
The National Organization of Rare Diseases supports rare disease education, research, and policy. https://rarediseases.org/
The Every Life Foundation supports rare disease education, research, and policy nationally. https://everylifefoundation.org/
The Rare Disease International is a global umbrella organization for the rare disease community. https://www.rarediseasesinternational.org/
The Foundation for Sarcoidosis Research supports research and provides information to patients. https://www.stopsarcoidosis.org/
NY Bio supports rare disease research and provides information on rare disease related efforts. https://www.stopsarcoidosis.org/
The Hermansky-Pudlak Syndrome Network provides information to patients and supports research. https://www.hpsnetwork.org/
The NYS Sickle Cell Advocacy Network supports research and patient programs in NYC and the Tri-state area. https://www.nyssicklecell.org/
Global Genes is a national organization offering information and connections to people with rare diseases. https://globalgenes.org/
The NGCF provides info and assistance as well as supporting research into Gaucher disease. https://www.gaucherdisease.org/
The Myasthenia Gravis Foundation supports patients and research into this rare disease. https://mgnet.rarediseasesnetwork.org/
SOFT empowers families with children with Trisomy 18, 13 and related chromosomal disorders. https://trisomy.org/#/
The Ehlers-Danlos Society serves people with Ehlers-Danlos Syndrome and hypermobility disorders. https://www.ehlers-danlos.com/
A national organization with many state chapters for people and families affected by Cystic Fibrosis. https://www.cff.org/
The MDA is dedicated to helping people with Muscular Dystrophy live longer, more independent lives. https://www.mda.org/
The ALS Association provides information and support for people affected by ALS. https://www.als.org/
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