Upcoming Events

Past Events

Celebrate Rare Disease Day by Sharing Your FD Foundation Story

On February 28th, we join the global community in honoring Rare Disease Day — a day to raise awareness, amplify voices, and celebrate the strength of rare disease communities around the world.

This year is especially meaningful as we also commemorate the 75th Anniversary of the Familial Dysautonomia Foundation. For seven and a half decades, the FD Foundation has been shaped by the stories, dedication, and resilience of families, individuals, clinicians, researchers, and supporters like you.

To honor Rare Disease Day and our 75th year, we invite you to tell us (on social media) one way the Foundation has helped you along your FD journey.

Your post can be:

A favorite photo
A short video telling a story
A written caption sharing an example

Whether it’s a memory from a conference, a moment of support during a difficult time, a milestone achieved, or simply a message of gratitude — your story matters.

Our goal is to reach 75 posts from our community on this special day — one for each year of the FD Foundation — to increase visibility for Familial Dysautonomia and the strength of our community.

How to Participate on February 28th:

Post your photo, video, or message on social media
Include a short caption about your FD Foundation experience
Use hashtags like #RareDiseaseDay, #FD75, and #FamilialDysautonomia
Tag the FD Foundation so we can see and share your post

Together, these stories will remember our past, honor the present, and inspire hope for the future.

Thank you for being part of the FD Foundation family and for helping us raise awareness for Familial Dysautonomia on Rare Disease Day — especially during this meaningful 75th anniversary year.

P.S. Prefer not to post on your own social media? You can still share a memory by sending it to us at email and we’ll post it on the Foundation’s social media platforms.

Connect with Us

Facebook

Twitter

Photos by Rick Guidotti, POSITIVE EXPOSURE EIN 13-6145280

315 W 39th St, Suite 701, New York, NY 10018

212.279.1066

Email Us

Let's Connect

Website Disclaimer
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.

The Foundation provides linked sites only for the convenience of the visitor. The Foundation does not control nor does it warrant the accuracy of any information provided by these linked sites. Individually identifiable user information is not collected through this site unless voluntarily submitted to the Foundation by the user. Linked sites may have different privacy policies. Any User information submitted directly to the Foundation will not be shared with other parties without the express written consent of the User.

Privacy Policy
The Familial Dysautonomia Foundation will not share or sell any personal information (name, address, email address, phone numbers) that you submit through this website or offline with any third party organization without your explicit consent.

If you conduct a transaction on our website for the purpose of a charitable contribution, we will not record or store any of your credit card information on our servers or in our records. All credit card transactions are conducted through secure web pages.

If you make an online contribution to one of our events or fundraisers, we may ask your permission to list your name and/or the amount of your contribution and/or the name of the organization you represent (if applicable) as a sponsor of the event or as a contributor to the event. We will not list any of your personal information without your consent.