Shwachman-Diamond Syndrome Alliance (@CureSds) header
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Shwachman-Diamond Syndrome Alliance

@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
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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
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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-…
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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
ICD Code Resources | Shwachman-Diamond Syndrome Alliance

ICD Code Resources | Shwachman-Diamond Syndrome Alliance

In 2023, Shwachman-Diamond Syndrome was assigned code D61.02 in the US ICD-10 coding system. This is the first time and place SDS has a unique and specific code. Read all about it here.

sdsalliance.org
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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].
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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
Global SDS Action Week & Awareness Day | SDS Alliance

Global SDS Action Week & Awareness Day | SDS Alliance

One simple action a day, all in one guide. Join SDS families around the world.

sdsalliance.org
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👉 About SDS Action Week: sdsalliance.org/action-week 👉 Open your checklist: sdsalliance.org/awareness-we… 👉 Read the report: sdsalliance.org/pfdd
Global SDS Action Week & Awareness Day | SDS Alliance

Global SDS Action Week & Awareness Day | SDS Alliance

One simple action a day, all in one guide. Join SDS families around the world.

sdsalliance.org
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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
Eszter Hars @ NAPAAC Memphis TN October 2026

ALT Eszter Hars @ NAPAAC Memphis TN October 2026

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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 Is Now Live! | October 2026 SDS Spotlight

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

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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
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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
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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

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
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📖 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

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
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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
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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.
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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
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👉 SDS POPS Interest Form: form.jotform.com/26218658377… SDS POPS website: sdsalliance.org/sds-pops SDS Scientific Congress Website: sds-congress2027.com
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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
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📝 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…
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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
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👉 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

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
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