Skip to content
Understanding SCA

About this site

Every source used

All 26 sources referenced anywhere on this site, grouped by the kind of evidence each one is — because a government database and a company press release are not equivalent, and it matters which one a claim rests on.

Government / regulator5

Public registry7

Peer-reviewed literature1

  • GeneReviews

    University of Washington / NCBI Bookshelf

    Expert-authored, peer-reviewed chapters on inherited conditions. The standard reference for SCA genotypes. Technical but authoritative.

Patient organisation7

  • National Ataxia Foundation

    National Ataxia Foundation

    The main US patient organisation for the ataxias. Support groups, clinic directory, research news and a patient registry.

  • Pharma news

    National Ataxia Foundation

    Running list of drug development announcements across the ataxias, compiled from company releases.

  • Ataxia UK

    Ataxia UK

    UK patient organisation. Publishes practical guidance on living with ataxia and funds research.

  • Rare Disease Video: Spinocerebellar Ataxia

    National Organization for Rare Disorders

    Short video overview with accompanying text. Independently states that there are no FDA-approved therapies and that treatment is symptomatic and supportive.

  • SCA27B Ataxia Foundation

    SCA27B Ataxia Foundation

    Organisation focused on the FGF14-related form. Hosts awareness videos, including material on the ataxia in Bill Nye’s family, and specialist Q&A sessions.

  • National Ataxia Foundation video channel

    National Ataxia Foundation

    Years of research updates, conference sessions and interviews with people living with ataxia.

  • National Organization for Rare Disorders

    NORD

    Rare disease umbrella organisation. Useful for financial assistance programmes and general rare disease navigation.

Securities filing1

  • Biohaven Ltd. Form 10-K, fiscal year 2025

    US Securities and Exchange Commission

    Annual report. Filings are legally accountable in a way press releases are not, which makes them a better source for programme status.

Company statement2

Trade press3

Next

How this site was built

The method behind these sources, and the limitations that come with it.