Helping you find answers

Is our mission.

Resources

As the leaders in FD treatment and research, we want to help you find answers. Learn about FD research, treatment options, and how we’re fighting FD together from this collection of news you can use. The links below are a compilation of organizations directly affiliated with the FD Foundation, partnerships that have been developed, and additional resources for the FD community.

 

If you'd like to share a useful resource that isn't listed on this page, let us know via email.

 

Other FD Organizations

The FD Foundation works in partnership with organizations domestically and internationally to further care and research. Stay connected with your local FD community or contact one of our FD professionals by clicking on the link(s) below.

 

Dysautonomia Center at NYU

NYU Dysautonomia Center Blog

Hadassah University Medical Center - Israel

Montreal Chapter of Dysautonomia

FD UK

 

FD Knowledgebase

Interested in learning about the science or history behind familial dysautonomia? Working on a research project or grant? Check out the links below:

 

FD Presentation Deck

The Latest in Research and Clinical Care in Familial Dysautonomia (2021-2022)

The Latest in Research and Clinical Care in Familial Dysautonomia (2020-2021)

National Center for Biotechnology – Familial Dysautonomia articles

Neurodevelopmental Congressional Neuroscience Caucus Briefing - Full Program; Dr. Frances Lefcort's Presentation 

 

Genetic Screening/Rare Disorders

One of the most important ways we can create a world without FD is through genetic screening. Thanks to funding from the Foundation, the discovery of the FD gene ushered in a new era of carrier testing.

 

Because the FD gene is passed down in a recessive manner, most people carrying the FD gene do not know it.

For more information on rare disorders, genetic screening and to obtain testing, please visit one of organizations below:

 

EveryLife Foundation is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

GeneReviews: Familial Dysautonomia is an online database containing standardized peer-reviewed articles that describe specific genetic diseases, like FD, while also providing current disorder-specific information about diagnosis, treatment and genetic counseling.

Global Genes is the leading patient advocacy organization working to eliminate the challenges of rare disease.

Jewish Genetic Disease Consortium is an alliance of non-profit organizations increasing awareness about Jewish genetic diseases and encourages timely and appropriate carrier screening for all persons who have any Jewish ancestry, as well as couples of mixed heritage. 

JPatible is a private at-home genetic testing program with a couple's compatibility matching program.

JScreen.org is a national non-profit offering comprehensive genetic screening and education programs.

Know Rare is a non-profit connects you to new research and clinical trials in rare disease.

National Organization for Rare Disorders (NORD) is a federation of individuals and patient organizations providing advocacy, research support, educational services and patient assistance programs on behalf of the rare disease community.

Norton & Elaine Sarnoff Center for Jewish Genetics strives to inform the community on genetic diseases and raise awareness for available options, including its own subsidized genetic counseling and screening program.

The Orphan Disease Center at UPenn exists to facilitate and fund research, as well as develop transformative therapies for rare diseases.

 

Housing & Other Benefits

Housing benefits and resources vary based on location. The below links can be used as a guide to help identify resources in your area. Found a useful site in your area? Let us know.

 

New York Housing Resource Center is a central depository for housing-related services and resources. Live outside New York? We recommend looking for a similar resource in your state that is either publically or privately funded.

NYHRC Guidebook to Rights and Responsibilities is a compilation of online resources from across New York State related to fair housing, tenant or homeowner rights and responsibilities.

Medicare and Medicaid Benefits

  • Medicare is a federal program that provides health coverage for those above 65+ or for individuals under 65 and have a disability, regardless of income.
  • Medicaid is a state and federal program that provides health coverage to those with limited income and resources.

 

Disability & Related Topics

Have you found yourself looking for a resource to help you emotionally, physically or medically outside of the doctors office? The following organizations provide various services that are available for the FD community.

 

Kids of Courage provides practical and emotional support for families and children who would otherwise be confined to their homes and hospitals. They provide free programming year-round; complete with trips, weekends and fun events.

Marlene Meyerson JCC creates opportunities for people to connect, grow, and learn within an ever-changing Jewish landscape.

National Disability Institute focuses on helping build a better financial future for people with disabilities and their families.

Oley Foundation is a non-profit organization that strives to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy and networking.

Project Sunshine provides free, developmentally appropriate play opportunites to support strong mental and physical health of children facing pediatric illnesses.

Respect Ability is a non-profit organization that works collaboratively with employers, elected officials, policy makers, educators, self-advocates, non-profits and more to fight stigmas and advance opportunities for people with disabilities.

The Shore Foundation is a non-profit organization that refurbishes donated corporate computers and provides them to people in need within the community.

VISIONS - Services for the blind and visually impaired is a non-profit rehabilitation and social service organization that develops and implements individualized programs to assist people of all ages who are blind and visually impaired to lead independent and active lives.

OU's Yachad will be launching a phone referral service called REACH, which will offer recommendations of service providers in the New York region based on the caller's need. 

The Jewish Museum has engaging programs for children and adults with disabilities. For more information please contact access@thejm.org.

 

Grief and Bereavement

RARE Revolution's bereavement survey - Bereavement is a part of life and in the world of rare and chronic disease it can become a looming presence.

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The information provided in the Dysautonomia Foundation web site is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, or your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.

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Medical Disclosure
The FD Foundation does not offer medical advice. We always recommend that you contact the Dysautonomia Center (link here) or your personal physician.