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
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.
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.
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.
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.
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
Belgium
RaDiOrg – Rare Diseases Belgium
Brazil
Canada
Canadian Organization for Rare Disorders (CORD)
Rare Disease Foundation
Colombia
Federación Colombiana de Enfermedades Raras (FECOER)
France
Germany
Allianz Chronischer Seltener Erkrankungen (ACHSE)
Greece
95 – Ελληνική Συμμαχία για τους Σπάνιους Ασθενείς (Rare Alliance Greece)
India
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
Poland
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)
Regions
Africa
Asia Pacific
Asia Pacific Alliance of Rare Disease Organizations (APARDO)
Europe
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.
Research Literature
You can learn more about current and past SRS research by reading through the published literature on the subject.
SRS Videos
You can register on the SRF conference website to access videos created by researchers and clinicians discussing their work with SRS.
