Resources for

Family Members and Caregivers

If your loved one has been diagnosed with Snyder-Robinson Syndrome, you are not alone. There are resources to help you navigate doctors visits, information to help you better understand the disorder, and support services to connect you with other families going through the same thing.

Support Resources

Medical Resources

SRS Information

Support Resources

When someone you love is diagnosed with a disease as rare as Snyder-Robinson Syndrome, it can feel like no one else understands what you’re going through. Despite being small in numbers, we have an incredibly powerful network of SRS families and loved ones who are here to offer support, advice, and resources to ensure that you are not alone on this journey.

SRS Family Online Support Group

There is a private Facebook group for SRS loved ones to share their experiences, resources, and support with one another from all around the world. This is the primary setting for communicating with our SRS community. Family members & loved ones that request to join receive admission into the group quickly.

Join the SRS Family Group

Virtual Table for 5

We host virtual meet-ups with around 5 SRS families at a time to get to know each other and share resources. If you’re interested in taking part in this, sign up for free SRF membership and select “participating in virtual SRS family meet-ups” on the last question.

Sign up today

SRS Stories

Read stories from other SRS families to see how they’ve navigated life with SRS. You can submit your SRS story as well.

SRS Stories

Navigating Appointments

Document to bring to doctors visits

This document contains information collected by SRS patient records from the Natural History Study (NHS) and can be brought to your loved ones’ doctors for their consideration & better understanding of possible medical issues associated with SRS. It is not medical advice, but rather an ongoing list of all of the medical findings in the SRS population, as reported by the SRS families enrolled in the Natural History Study. This list will be updated as more patient information is received. If you are an SRS family who has not yet taken part in the Natural History Study, please contact us today. You have information about your loved one’s condition that will help our data and better our understanding of SRS as a whole. 

View and print document

Additional Resources

The Snyder-Robinson Foundation has compiled this list of resources to help you identify possible options to meet your needs. The resources listed below are not endorsed by SRF & SRF is not responsible for the content of or service provided by any of these resources.

Resources by Location

If your country is not listed or if there is an organization you would like added to the list, please contact us.

Countries

Australia

Genetic Alliance Australia
Rare Voices Australia

Austria

Pro Rare Austria

Belgium

RaDiOrg – Rare Diseases Belgium

Brazil

Muitos Somos Raros

Canada

Canadian Organization for Rare Disorders (CORD)
Rare Disease Foundation

Colombia

Federación Colombiana de Enfermedades Raras (FECOER)

France

Alliance Maladies Rares

Germany

Allianz Chronischer Seltener Erkrankungen (ACHSE)

Greece

95 – Ελληνική Συμμαχία για τους Σπάνιους Ασθενείς (Rare Alliance Greece)

India

IndoUSrare

Ireland

Rare Diseases Ireland

Italy

Federazione Italiana Malattie Rare (UNIAMO)

Japan

Advocacy Service for Rare & Intractable Diseases (ASrid)
Japan Patients Association

Mexico

Organización Mexicana de Enfermedades Raras (OMER)

Netherlands

Vereniging Samenwerkende Ouder En Patiëntenorganisaties (VSOP)

New Zealand

Rare Disorders NZ

Poland

Krajowe Forum na rzecz terapii chorób rzadkich – ORPHAN

Sweden

Riksförbundet Sällsynta Diagnoser

United States

NORD Patient and Caregiver Resource Center
Genetic and Rare Diseases Information Center – Patients, Families & Friends
Center for Parent Information & Resources – Rare Disorders
Children’s National – Resources for Families

United Kingdom (UK)

Rare Disease UK

Regions

Africa

Africa Rare

Asia Pacific

Asia Pacific Alliance of Rare Disease Organizations (APARDO)

Europe

Rare Diseases Europe (EURODIS)

Rare Disease Help Lines by Country

Find your country’s rare disease help line through EURODIS. Rare disease help lines offer social, psychological & information solutions.

SRS Information

Learn more about Snyder-Robinson Syndrome through information on our website, research literature, and videos created by researchers and clinicians.

SRS Overview

Learn more about Snyder-Robinson Syndrome, what causes it, diagnosis, and treatment.

Learn more about SRS

Research Literature

You can learn more about current and past SRS research by reading through the published literature on the subject.

Read SRS research literature

SRS Videos

You can register on the SRF conference website to access videos created by researchers and clinicians discussing their work with SRS.

View SRS Videos