A place for the rare disease community to engage & advocate!
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New York State Rare Disease Collaborative
If you have coverage through the NY Marketplace or NY Essential Health Plan
If you have coverage through the NY Marketplace or NY Essential Health Plan
Recent changes at the federal level may affect your coverage and/or how much you may pay for coverage, especially if you expect to receive premium assistance. Check soon at New York State of Health website for Marketplace coverage, or the NYS Essential Plan for NYEHP coverage. If you have additional questions, consult a trained insurance navigator. ACT TODAY TO BE SURE!
Recent changes at the federal level may affect your coverage and/or how much you may pay for coverage, especially if you expect to receive premium assistance. Check soon at New York State of Health website for Marketplace coverage, or the NYS Essential Plan for NYEHP coverage. If you have additional questions, consult a trained insurance navigator. ACT TODAY TO BE SURE!
New Bill Will Help Children with Rare/Fragile Medical Conditions
New Bill Will Help Children with Rare/Fragile Medical Conditions
Bill A.2384/S.965 Enables out-of-network coverage
Bill A.2384/S.965 Enables out-of-network coverage
A new bill from Assemblyman Eichenstein (48/D) and Senator Hoylman-Sigal (47/D), can help children with rare and other serious medical conditions get care by making it easier for their families to seek treatment from out-of-network specialists.
New Mental Health Survey for Rare Disease Patients Debuts!
New Mental Health Survey for Rare Disease Patients Debuts!
Survey will help study mental health needs for rare patients in US & UK
Survey will help study mental health needs for rare patients in US & UK
A new survey has been released to study the mental health needs of people with rare diseases, and patients with all rare diseases from the United States and United Kingdom are welcome to try it.
NYS RDAC Bill Passes Senate!
NYS RDAC Bill Passes Senate!
Will create a New York State rare disease advisory council
Will create a New York State rare disease advisory council
Bill S.1287a / A.1296a, from Senator Roxanne Persaud (19/D) & Assemblywoman Amy Paulin (88/D), passed the NY Senate unanimously on March 19., following unanimous passage by the Health Committee March 4th. The bill now needs passage by the Assembly Ways & Committee to advance to a vote by the full Assembly.
Rare NY Spotlight
Rare NY Spotlight
Dynamic Mother/Daughter Duo shine a light for people with Hermansky Pudlak Syndrome
Dynamic Mother/Daughter Duo shine a light for people with Hermansky Pudlak Syndrome
Meeting Ashley Appell, you can’t miss her unique brand of spunk. It’s a mix of wanting to hug the world with a determination to make it a better place. Then you meet mom Donna and quickly learn where Ashley gets it from, and how this duo became such empowered advocates for people with Hermansky Pudlak Syndrome.
Governor Hochul Signs Step Therapy Bill
Governor Hochul Signs Step Therapy Bill
Bill limits use of step therapy
Bill limits use of step therapy
In late December Gov. Kathy Hochul signed step therapy reform bill S.1276a/A901a by Senator Neil Breslin (46/D) and Assemblyman John McDonald III (108/D) into law, following a long effort by patient and provider groups from across New York State and national advocacy organization Aimed Alliance.
NY Releases Rare Disease Report
NY Releases Rare Disease Report
Report identifies needs of people with rare diseases in New York state
Report identifies needs of people with rare diseases in New York state
The New York State Dept. of Health has released the final report of a Rare Disease Work Group, created by the state Legislature to " identify best practices that can improve awareness of rare diseases and refer people with potential rare diseases to specialists, and evaluate barriers to treatment, including financial barriers".
Some facts about rare diseases in the US:
Some facts about rare diseases in the US:
A rare disease is one which affects fewer than 200,000 people in the country. (Source: US Food & Drug Administration)
There are an estimated 10,000 rare diseases. (Source: US National Institutes of Health)
An estimated 25 - 30 million Americans, or 1 in 10, have a rare disease. (Source: US National Institutes of Health)
Almost half of all people with a rare disease are children. (Source: Every Life foundation)
On average, it take a person an average of 6 years to receive a diagnosis. (Source: National Organization of Rare Diseases)
Almost 95% of rare diseases lack a specific FDA approved treatment. (Source: US Food & Drug Administration)
Find help for managing the life challenges associated with having a rare disease.
Read up on health policy news and issues affecting people with rare diseases in New York State.
Look for organizations that offer programs for people with rare diseases and support research.
A collection of tips and information to help you advocate for your community and your issues.
Learn more about treatment for, and research into, rare diseases from public sources.
News and events from New York State and beyond specifically for people with rare diseases.
There's strength in numbers!
There's strength in numbers!
People with different rare diseases face many of the same challenges, including finding a diagnosis, getting quality health care, and managing the life struggles associated with having a rare disease. By working together to learn, share, and advocate we can make a difference for us all!
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