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Peer Support Communities

No one understands better than us - the patients and their families - what it is like to live with SDS. There is no substitute for the support we can offer each other as patients and families who "have been there" or are "in the thick of it". Compassionate patients and families are available day and night to support those who need it - be it patients and families newly diagnosed, going through a crisis, or ready to take action to improve outcomes. We have created several resources to facilitate peer support. In addition, you can find a list of official national nonprofits focused on SDS patient support, below.

 New!  SDS Community group on
Safe and secure, with automatic translations into many languages, e.g. English, Spanish, Portugese, French, German, Italian, Czech, Turkish, Croatian, and Persian.

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We have a private Facebook group for SDS families and their close supporters, who are interested in honest, mindful, and proactive discussions about SDS, the latest research, and opportunities to get involved and make a difference, called the ACTION TEAM Facebook group. Please join if you would like to get involved.

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We also have Facebook support groups that are focused on certain regions (e.g. Latin America), languages  (e.g French), and demographics (adult SDS patients). Please reach out to us if you would like to get connected.

Plus, we maintain a list of SDS-focused country-specific registered charities.

See them listed alphabetically by country in the table below.

Don't see YOUR country represented? We can help you set up a group and even host a simple info page for you to help serve YOUR community. Contact us!

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United Kingdom
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United States
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