The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment. CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…
We’re excited to announce our partnership with Day Undefined! Our members can look forward to exclusive new resources created for the Ataxia community. Day Undefined, a company founded by two members of the NAF community, will bring you a new marketplace of accessible items for people with Ataxia, webinars, and Read More…
NAF is seeking a motivated law/pre-law school or public policy graduate/undergraduate student for a June 17 – October 15, 2024, Public Policy & Advocacy Internship. The internship will provide students with the opportunity to learn about federal and state rare disease patient advocacy, research development and health policies while developing Read More…
In our continued commitment to improving clinical care and accelerating treatment development, we’re proud to announce NAF’s new Ataxia Centers of Excellence (ACE) designation! The ACE program will recognize exceptional centers providing comprehensive care and services for individuals affected by Ataxia and their families. In addition to providing expert clinical Read More…
We’re excited to announce the first international site for the Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) natural history study! NAF is proud to partner with Ataxia Canada and the Centre hospitalier de l’Université de Montréal in Montreal, Québec to provide the Ataxia community with a new Read More…
There are two main categories of human clinical trials: (1) observational studies, and 2) interventional studies. Both types of clinical studies are essential to developing new therapies for rare diseases like Ataxia. There are multiple trials taking place right now for Ataxia. In this PrepRARE article, learn a little more Read More…
In 2018, the Gordon and Marilyn Macklin Foundation and NAF partnered on a critical project for the Ataxia community: A relaunch of the Clinical Research Consortium for the Study of Cerebellar Ataxias, better known as the CRC-SCA Natural History Study. The CRC-SCA is an ongoing clinical study that aims to Read More…
We are both happy (for her) and sad (for us) to announce the retirement of Sue Hagen, Research Services Director. We are deeply grateful for her 15 years of dedication to the Ataxia community. Her fierce advocacy for patient needs and commitment to acceleration of research efforts have been an Read More…
We’re excited to announce that NAF will award more than $850,000 in Ataxia research grants this year! This year’s funded projects will support research on 8+ genetic forms of Ataxia, from the most common to some of the rarest, as well as address shared disease pathways that could provide insights Read More…
DISCLAIMER: The information provided in this article is for informational use only. NAF encourages all readers to consult with their primary care provider, neurologist, or other healthcare provider about any advice mentioned. Deciding whether to donate cerebral spinal fluid (CSF) is a very personal, but impactful decision. In the video Read More…
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