Shwachman-Diamond Syndrome Alliance is a nonprofit aimed at accelerating research and therapy development for this rare disease. Global collaboration is key.
Joined February 2020
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SDS Action Week, Day 6: Join Monthly Giving Allies. 💙
A monthly gift of any amount helps us move toward clinical trials by 20230, giving SDS patients and families more birthdays to celebrate. Links in the comments.
#CureSDS #SDSActionWeek #SDSAwarenessDay #ShwachmanDiamond
👉 Join Monthly Giving Allies: sdsalliance.org/post/monthly…
👉 Other ways to give: sdsalliance.org/donate
👉 Start a fundraiser: sdsalliance.org/fundraise
👉 Open your checklist: sdsalliance.org/action-week-…
SDS Action Week, Day 5: A guide for what you’re facing. 📚
We now have free guides and tools for families, teachers, and care teams. Share with your community, care teams, or a newly diagnosed family. Links in comments.
#CureSDS #SDSActionWeek #SDSAwarenessDay #ShwachmanDiamond
👉 sdsalliance.org/guides
👉 School letter: sdsalliance.org/post/sds-sch…
👉 Gene Therapy Explainer: sdsalliance.org/gene-editing…
👉 Action Week: sdsalliance.org/action-week
👉 Checklist: sdsalliance.org/action-week-…
SDS Action Week, Day 4: Learn it, then use it. 🎓
The SDS PACER Course is free and self-paced, designed for patients and families*.
👉 Start the course: hubs.li/Q04DghF30
#CureSDS #SDSActionWeek #SDSAwarenessDay #ProjectPACER
* Researcher version coming soon.
👉 Start the course: sdsalliance.org/courses
👉 Open your SDS Action Week checklist: sdsalliance.org/action-week-…
👉 More about Action Week: ww.sdsalliance.org/action-we…
SDS Action Week, Day 3: Add your voice to the research. 🧬
SDS-GPS: the global patient survey platform. Your voice shapes research and what/how clinical trials are designed. Free. In 5 languages.
hubs.li/Q04D6dxh0
#CureSDS #SDSActionWeek #SDSAwarenessDay #ShwachmanDiamond
Already on SDS-GPS?
👉 Log in: sdsalliance.org/sds-gps-logi…
New?
👉 Join: sdsalliance.org/sds-gps-join
Your privacy is protected. sdsalliance.org/sds-gps-priv…
👉 SDS Action Week checklist: sdsalliance.org/action-week-…
SDS Action Week, Day 2: Make SDS visible in the medical record. 🩺
US: SDS has an ICD-10 code: D61.02. Share it with your medical team and confirm it's in your chart.
hubs.li/Q04D2s2j0
hubs.li/Q04D2skn0
#CureSDS #SDSActionWeek #SDSAwarenessDay #ShwachmanDiamond
Living outside the US? SDS Alliance is working on the groundwork to get a code for other countries and regions too. If you have a medical or coding background and would like to help, please email [email protected].
Global SDS Action Week! November 1 to 7, building to SDS Awareness Day on November 7. 💙 New interactive checklist of actions for each day of the week.
👉 About SDS Action Week: hubs.li/Q04CYQQc0
#CureSDS #SDSActionWeek #SDSAwarenessDay #ShwachmanDiamond
👉 About SDS Action Week: sdsalliance.org/action-week
👉 Open your checklist: sdsalliance.org/awareness-we…
👉 Read the report: sdsalliance.org/pfdd
We are at the NAPAAC symposium at St. Jude, where researchers and doctors who care for bone marrow failure came together, and patient organizations like ours were invited to take part. Thank you to the organizers for including us so thoughtfully.
#CureSDS #NAPAAC
ALT Eszter Hars @ NAPAAC Memphis TN October 2026
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 — 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
More detail in our full blog post: sdsalliance.org/post/sds-pac…
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
📖 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?
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
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.