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NEWS

Posted on February 21, 2018
2018 Rare Disease Day

Launched by EURORDIS and its Council of National Alliances in 2008, Rare Disease Day has and continues to collaborate with organizations globally in order to put on events, create media coverage, and ultimately raise awareness amongst the general public and policy-makers about rare diseases and their impact on patients’ lives. Rare disease research is crucial to providing Read More…

Posted on October 30, 2017
2018 Annual Ataxia Conference Registration Open

Registration for 2018 AAC in Philadelphia, PA opens on Wednesday, November 29th. Join us to meet new friends, learn about the latest in Ataxia research, and share strategies for living with Ataxia. Read More…

Events

Feb 23, 2018 12:00 am - 11:59 pm
Abilities Expo – Los Angeles

For nearly 40 years, Abilities Expo has been the go-to source for the Community of people with disabilities, their families, seniors, veterans and healthcare professionals. Every event opens your eyes to new technologies, new possibilities, new solutions and new opportunities to change your life. Read More…

Feb 24, 2018 12:00 am - 11:59 pm
Mid-Atlantic Social Group Meeting

Ataxia Genetics: From Basic Principles to Newest Updates Towson, Maryland Weiyi Mu, ScM, CGC, Genetic Counselor at Johns Hopkins University, Institute of Genetic Medicine and the Johns Hopkins Ataxia Center will be presenting information on Ataxia genetics followed by a Q & A. To register, contact Donna DeLano Neuworth at ddeleno1@jhmi.edu or 410-616-2811 Read More…

Feb 25, 2018 03:00 pm - 04:30 pm
Willamette Valley Ataxia Support Group Meeting – Portland Location

For more information contact Jason Wolfer at wolfer.jason@gmail.com or 503-502-2633. Read More…

Feb 28, 2018 12:00 am - 11:59 pm
Rare Disease Day

Rare diseases are not so rare:  there are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. Read More…

Member Stories

Ed Schwartz
Ed Schwartz

“My name is Ed Schwartz. I’m co – chairman of “The Western Pennsylvania Ataxia Support Group of the National Ataxia Foundation (NAF).
…” Read More…


Jonathan Zilles
Jonathan Zilles

“I’m Jonathan Zilles. I was diagnosed with Friedreich’s Ataxia when I was 11 years old. Life as a kid with
Friedreich’s was pretty normal, but I fell down a lot. My symptoms started early and included hand-eye coordination issues….” Read More…


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