Octavian's SDS Story: A Rare Gem with EFL1
Patient Stories
Stories connect. This page is dedicated to our global community of patients and families who are all impacted by SDS in various ways. No matter whether your SDS is "mild or severe", your story matters! We want to paint a picture of what SDS looks like and how varied the experiences are -- so that more patients can be diagnosed sooner and benefit from community support and better treatments. We also want to show the world that the SDS community is strong and worthy of investment into new therapies and cures. Join us by sharing YOUR story.
Contact the SDS Alliance on Facebook or email us at connect@SDSAlliance.org and fill out this release form. We are publishing patient stories on the SDS Alliance blog, Facebook page, Twitter, and more. You can make it as personal as you like with names, photos, and more, or keep it more private to fit your preference. We will help with editing and layout. We will work with you.
Alex's SDS Story and Diagnostic Odyssey (US)
How Elijah inspired Hero Kids in the Making - an SDS Story from the US
2023 Annual Global Virtual Fundraiser - 4 Million Steps Closer to #CureSDS - Huge Success
2022 Annual Global Virtual Fundraiser - Three Million Steps Closer to #CureSDS - Huge Success Again
Ángel Leonardo's SDS Story from Mexico [Spanish and English]
A Blast from the Past: Cresta's SDS Story from the US
Mike's SDS Story from The Netherlands [Dutch and English]
Nora's SDS Story with a Twist: Our Quest for a Cure
2021 Annual Global Virtual Fundraiser - Two Million Steps Closer to #CureSDS - Huge Success
Bringing Shwachman-Diamond Syndrome to the Forefront
Betty's SDS Story and Journey through Bone Marrow Transplant
Whitner's SDS Story and Journey to Bone Marrow Transplant
Kim and Harrison's SDS Story from the UK
Ryker's SDS Story and Journey to Bone Marrow Transplant
Healing Henley. An SDS Story told by Henley's mom, Jess
Carter and Skye's Story: A short video for Maddie Riewordt's Vision
Gracie van Brunt – singer, songwriter, and rare disease advocate – shares her story in a podcast.
Max's Story: A short insight as part of the 2020 Jeans for Genes
Gracie's Story: Finding my voice and insights into my BMT
About a mother's relentless quest for a cure for SDS
Teen author dedicates a children’s book to her twin brother with Shwachman-Diamond syndrome
How families are reshaping Shwachman-Diamond syndrome research
Share with us your SDS journey. It is a wonderful resources for new families and old friends alike.
Do you have an SDS story to tell? Would you like to share your SDS journey with the SDS community?
After Amazon mix-up, man becomes advocate for little boy with Shwachman-Diamond Syndrome
A mom from NZ explains how her rock ‘n roll lifestyle was turned upside down by SDS.
The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a US-based 501(c)(3) nonprofit organization serving the global SDS community to improve and save the lives of people affected by SDS by focusing on research and therapy development.
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