Shwachman-Diamond Syndrome Alliance

11/06/2026

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. It advances our programs, and it shows strength in numbers.

Everything you’ve seen this week, from the Voice of the Patient report to the SDS PACER Course and our guides, started with you -- SDS patients and families -- at the center. If you can, please join today.

👉 Join Monthly Giving Allies: https://hubs.li/Q04DBs5y0
👉 Other ways to give: https://hubs.li/Q04DBs5z0
👉 Start a fundraiser: https://hubs.li/Q04DBs4R0
👉 Action Week info: https://hubs.li/Q04DBs5B0
👉 Open your checklist: https://hubs.li/Q04DBs4S0

What’s one way you’d like to help SDS research this year? Tell us in the comments. 👇

Learn how the SDS Alliance’s Monthly Giving Allies program helps fund research, support therapy development, and build momentum toward clinical trials for Shwachman-Diamond syndrome (SDS). Even small monthly donations make a meaningful impact.

11/05/2026

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:

📖 School success guide, for patients, families, and school teams
📝 School letter tool, which makes a personalized letter or trifold in minutes
🧬 Gene therapy guide, an interactive walkthrough in plain language for patients and families

Share one with a teacher, a doctor, or a newly diagnosed family.

👉 All guides: https://hubs.li/Q04DtBXQ0
👉 More insights into the school letter tool and guide: https://hubs.li/Q04DtBXP0
👉 Gene Therapy Explainer Tool: https://hubs.li/Q04DtzRx0
👉 Action Week info: http://www.sdsalliance.org/action-week
👉 Open your checklist: https://hubs.li/Q04DtBVy0

What guide would help you most that we haven’t made yet? Tell us in the comments. 👇

11/04/2026

SDS Action Week, Day 4: Learn it, then use it. 🎓

The SDS PACER Course is free and self-paced, designed for patients and families*.

- Six modules help you understand the science of SDS, how research works, and how to help move it forward.
- Each module takes about 30 to 60 minutes, and you earn a badge and certificate for each one. You can take a break and resume anytime.
- It also helps prepare you to serve on research and drug development advisory boards and provide other input, which is a critical requirement for drug development.
- No science background needed.
- It was built for people living with SDS, with feedback from patients and caregivers on three continents.

👉 Start the course: https://hubs.ly/Q04DghCZ0
👉 Open your SDS Action Week checklist: https://hubs.ly/Q04DghNR0
👉 More about Action Week: https://hubs.ly/Q04DghK30

Which module are you most curious about? Tell us in the comments. 👇



* A clinician and researcher version is coming soon.
www.sdsalliance.org/courses

SDS Alliance offers a range of courses for the SDS community to learn all they need to know to become effective partners in research and advocate for the best care possible for themselves and their loved ones who live with Shwachman-Diamond Syndrome.

11/03/2026

SDS Action Week, Day 3: Add your voice to the research. 🧬

SDS-GPS is our global patient survey platform, and what you share there helps shape research and what/how clinical trials are designed. It is free; and available in 5 languages.

Already on SDS-GPS? The Gene Therapy Perspectives survey is waiting for you. It takes about 45 minutes, and you can take breaks.
👉 Log in: https://hubs.li/Q04D6dwT0

Not on SDS-GPS yet? Setting up an account takes about 30 to 60 minutes.
👉 Join: https://hubs.li/Q04D6dy20

Your privacy is protected. Learn more at https://hubs.li/Q04D6dtz0

👉 Open your SDS Action Week checklist to track your progress: https://hubs.li/Q04D6dwW0

What would make it easier for you to take part? Tell us in the comments. 👇

11/02/2026

SDS Action Week, Day 2: Make SDS visible in the medical record. 🩺

In the US, SDS has its own dedicated ICD-10 code: D61.02. Please share it with your medical team and ask them to confirm it is in your or your child’s chart. A specific code helps make SDS visible in medical records and research.

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].

👉 Learn more about how we got the code and how it works: https://hubs.li/Q04D2skp0
👉 Open your checklist: https://hubs.li/Q04D2ssK0
👉 We also have really cute T-shirts to help with this effort: https://www.bonfire.com/icd-10

Has a doctor ever asked you to explain SDS? Tell us in the comments. 👇



www.sdsalliance.org/icd

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.

11/01/2026

Want to join Global SDS Action Week but short on time? Share a graphic. 💙

Save any of the images below, or share this post, and add a sentence of your own about why you’re taking part. Your post can reach family, friends, teachers, and clinicians who may not know SDS.

SDS Action Week is November 1 to 7, building to SDS Awareness Day on November 7. Everything is on one page, including a checklist with one simple action a day:
👉 www.sdsalliance.org/action-week

11/01/2026

It’s Global SDS Action Week!
November 1 to 7, building to SDS Awareness Day on November 7. 💙

We put the whole week in one place: an interactive checklist with one simple action a day. Check off what you do, skip what doesn’t fit your life right now, and do them in any order, anywhere in the world.

Day 1: See how far your voice can go.
A year ago, you shared what life with SDS is really like. Those words became the Voice of the Patient report, shared with the FDA and available to patients, families, researchers, and drug developers worldwide. Read it, and send it to someone who should read it.

👉 About SDS Action Week: https://hubs.li/Q04CYQSY0
👉 Open your checklist: https://hubs.li/Q04CYQNK0
👉 Read the report: https://hubs.li/Q04CYQMD0

Which part of the report spoke to you most? Tell us in the comments. 👇

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

10/27/2026

This week, we are so excited to share your voice, our community's needs and priorities, with researchers and clinicians who care deeply and are working with us in partnership to move mountains together.

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, Dr. Marcin Wlodarski, Dr. Alyssa Kennedy, and Dr. Senthil Bhoopalan, for including us so thoughtfully.

We shared what families told us about living with SDS and what they hope for in the future, so that it can shape research and treatments.

It is the last day, and if you are here, please come say hello. Find us at the SDS Alliance table.

10/08/2026

In case you missed it — the SDS PACER Course is now live, and I shared everything you need to know in this month's Spotlight. 🎓
Six free modules. Plain language. No science background needed. Start whenever you are ready, at your own pace.
The course was built for you — by a community of patients, caregivers, and researchers who believe that an informed community is the foundation for better treatments.
👉 Watch the Spotlight: https://hubs.li/Q04y_Vsy0
👉 Start the course: https://hubs.li/Q04y_TJD0
📖 Blog post: https://hubs.li/Q04y_TLp0

What part of SDS do you most want to understand better? Drop it in the comments. 👇

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

10/02/2026

The SDS PACER Course is now live! And designed just for you. 🎓
Free.
Six modules to help you understand SDS, research, leukemia risk, clinical trials, stem cell transplant, and gene therapy — all in plain language.
No science background needed.
Earn a badge and certificate for each module you complete.

Knowledge alone doesn't cure our loved ones affected by SDS. But it helps you navigate it with more confidence — and know you are doing your part in getting better treatments for the future.

👉 Start the course: https://hubs.li/Q04y_P0F0
📖 Full blog post: https://hubs.li/Q04y_N_T0

What part of SDS do you most want to understand better? Drop it in the comments. 👇