@CureSds

Shwachman-Diamond Syndrome Alliance is a nonprofit aimed at accelerating research and therapy development for this rare disease. Global collaboration is key.

SDSAlliance.org
Joined February 2020
  • Tweets167
  • Following362
  • Followers170
25Media
In case you missed it — the SDS PACER Course is live. Free. Six modules. Plain language. No science background needed. 🎥 Watch: hubs.li/Q04y_TQS0 🎓 Start: hubs.li/Q04y_TQR0 #ShwachmanDiamond #RareDisease #CureSDS #ProjectPACER

The SDS PACER Course Is Now Live! | October 2026 SDS Spotlight

The SDS PACER Course — Patient and Family Edition — is now live and...

youtube.com
1
23
The SDS PACER Course is now live — free, self-paced, built for SDS patients and families. Six modules. Plain language. No science background needed. Badges and certificates included. 🎓 hubs.li/Q04y_NZf0 #ShwachmanDiamond #RareDisease #CureSDS #ProjectPACER
1
1
51
More detail in our full blog post: sdsalliance.org/post/sds-pac…

The SDS PACER Course Is Now Live! Deep Dive into SDS, Research, and How You Can Make a Difference

The SDS PACER Course is a free, self-paced online course for Shwachman-Diamond Syndrome patients and families. Six modules covering SDS science, research, and therapy development.

sdsalliance.org
2
13
In case you missed it — two opportunities for SDS patients and families to shape gene therapy trial design. Both still open. 🎥 Watch: hubs.li/Q04xk9hz0 🧬 Survey on SDS-GPS: whttp://ww.sdsalliance.org/sds-gps-login #ShwachmanDiamond #GeneTherapy #RareDisease #CureSDS

Your Voice Can Shape Gene Therapy for SDS | September 2026 SDS Spotlight

Gene therapy for SDS is advancing — and researchers need to hear fr...

youtube.com
1
26
📖 Blog post: sdsalliance.org/post/sds-gen… What questions do you think are most important for researchers to consider as they plan gene therapy clinical trials for SDS?

Patient Voices Needed to Shape Gene Therapy for SDS — Two Opportunities to Make It Count

SDS Alliance has launched a gene therapy perspectives survey on SDS-GPS. Learn why patient input matters at this stage of research and how to participate — including the GeneTX interview study at St....

sdsalliance.org
12
Gene therapy for SDS is advancing. Patient perspectives are needed now. Two opportunities: 🧬 Survey on SDS-GPS — live now 🎙️ GeneTX interview study at St. Jude. Schedule now. Your privacy is safe. 👉 Blog: hubs.li/Q04xk3MD0 #ShwachmanDiamond #GeneTherapy #CureSDS
1
1
90
Find the survey in your SDS-GPS account at sdsalliance.org/sds-gps-logi… or set up an account at sdsalliance.org/sds-gps-join. It's free and easy and takes 40-60 minutes.
12
SDS POPS is coming to Paris 🇫🇷 — in person for the first time. May 27–30, 2027 · adjacent to the International SDS Congress · in-person & online Please fill out our 3-minute interest survey: hubs.li/Q04sl6Qz0 More info 1. comment #SDSPOPS #CureSDS #ShwachmanDiamondSyndrome
1
56
👉 SDS POPS Interest Form: form.jotform.com/26218658377… SDS POPS website: sdsalliance.org/sds-pops SDS Scientific Congress Website: sds-congress2027.com
8
New school year. New teachers. New resources to help: 📝 Personalized school letter tool 📖 Comprehensive school guide for patients, families, and school teams. Free. 🔗 hubs.li/Q04rWDJR0 🔗 hubs.li/Q04rWDLx0 #ShwachmanDiamond #RareDisease #BackToSchool #CureSDS
1
33
📝 School letter tool: sdsalliance.org/school-lette… 📖 School guide: sdsalliance.org/school-guide 🎥 Watch the Spotlight: youtu.be/mxM9MnMzjX8 📰 Blog post: sdsalliance.org/post/sds-sch…
10
New: an interactive gene therapy guide for SDS patients and families. Plain language. No science background needed. A survey opens on SDS-GPS in September — get ready now. Links in comment! 🧬 Guide: hubs.li/Q04n_TwM0 #ShwachmanDiamond #GeneTherapy #RareDisease #CureSDS
1
32
👉 More insights in our blog: SDSAlliance.org/post/sds-gen… 👉 Explore the guide: SDSAlliance.org/gene-editing… 👉 Set up your SDS-GPS account: SDSAlliance.org/sds-gps-join

How YOU can help move gene therapy forward for SDS

Gene therapy for SDS is advancing. Learn what's being developed, why base and prime editing matter, and how your perspective can shape what comes next.

sdsalliance.org
11
I'm attending the World Orphan Drug Congress in Boston this week, the world's leading Rare Disease and Orphan Drug event. Ping me if you would like to meet up while you are in town! #CureSDS #WODC #WorldOrphanDrugCongress #PatientAdvocacy
1
23
And check out our brand-new Voice of the Patient Report for SDS at SDSAlliance.org/pfdd#vop

SDS PFDD Meeting | Shwachman-Diamond Syndrome Alliace

The goal of this externally-led patient-focused drug development meeting (EL-PFDD for SDS) is to provide the U.S. Food and Drug Administration (FDA), product developers, clinicians, and academic...

sdsalliance.org
13
A year ago: PFDD meeting for Shwachman-Diamond Syndrome. Today: the official Voice of the Patient report is published, submitted to the FDA, and freely available. Your words. Now documented and citable. hubs.ly/Q04k9KXC0 #ShwachmanDiamond #PFDD #VoiceOfThePatient #CureSDS

One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already...

The Shwachman-Diamond Syndrome Voice of the Patient report is now published and submitted to the FDA. Learn what the EL-PFDD meeting captured, how the report is used, and what comes next.

sdsalliance.org
1
6
Find the report at SDSAlliance.org/pfdd#vop

SDS PFDD Meeting | Shwachman-Diamond Syndrome Alliace

The goal of this externally-led patient-focused drug development meeting (EL-PFDD for SDS) is to provide the U.S. Food and Drug Administration (FDA), product developers, clinicians, and academic...

sdsalliance.org
4
Last week: RTWF grant and the garden analogy🌱. This week: how to water it💦. Our free fundraising guide for SDS families is live — 8 ways to help, many templates, and a free personalized video we'll make for you. hubs.li/Q04jtCqD0 #CureSDS #RareDisease #ShwachmanDiamond

How to Fundraise for Shwachman-Diamond Syndrome Research: A Free Guide for Families and Supporters

SDS Alliance's free fundraising guide helps families and supporters raise funds for Shwachman-Diamond Syndrome research — on their own terms, at any level.

sdsalliance.org
1
9
Start an online fundraising page today. sdsalliance.org/fundraise

Fundraise to #CureSDS | Shwachman-Diamond Syndrome Alliance

Thank you for your interest in rallying support to #CureSDS! As a rare disease community, our strength lies in our personal connections. When you share your family’s journey, you aren’t just asking...

sdsalliance.org
8
I'm at #ASGCT26 Annual Meeting this week! Message me to meet up. Would love to catch up in person about all things Shwachman-Diamond Syndrome to #CureSDS. American Society Of Gene And Cell Therapy, 2026 Annual Meeting, Boston, May 11-15
39
Load more