NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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Ataxia Global Initiative

Launched in April 2018, the purpose of SCA Global is to create global collaboration in clinical research efforts for the SCAs to achieve the following goals:

To better understand the manifestation, evolution and impact of the various SCAs
To develop and validate biomarkers which can be used in future interventional trials
To facilitate access to people with SCAs who are willing to participate in clinical trials

SCA Global has since changed their name to Ataxia Global Initiative. Visit their homepage for more information.