Shwachman-Diamond Syndrome Alliance

06/08/2026

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! And check out our brand-new Voice of the Patient Report for SDS at https://hubs.ly/Q04ktc7F0

06/04/2026

One year ago today, the SDS community showed up. In Cincinnati. Online. From around the world. You shared what it actually feels like to live with SDS — the fear, the exhaustion, the hope, and the things no lab result can capture.
This month's SDS Spotlight marks that anniversary — and shares what came of it.
The Voice of the Patient report for Shwachman-Diamond Syndrome is now published, submitted to the FDA, and available to anyone working to understand and treat this disease. Your words. Your stories. Now a permanent, citable document that researchers, drug developers, and regulators can use.

Watch the Spotlight, then read the full blog post for more on what the report documents and how it will be used.

Do you see your experience and priorities represented? Would you like to share more?

👉 https://hubs.ly/Q04k9K6f0
📖 Full blog post: https://hubs.ly/Q04k9Mcb0

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.

05/30/2026

This month, while celebrating the RTWF grant to support gene therapy development, we introduced you to the garden — the idea that SDS Alliance tends a whole ecosystem of research, not just one favorite project, and that patients and families are the sun that keeps it growing.

Today, we want to build on that momentum — 🌱 here is how you can help water the garden to build toward clinical trials by 2030.

We just published a free 23-page community fundraising guide — Fundraise Your Way to — for patients, families, and supporters who want to do something, on their own terms, without it taking over their lives.
It covers eight ways to get involved, from becoming a Monthly Giving Ally with a $5 monthly gift, to birthday fundraisers, t-shirt campaigns, local events, and our annual Step Up to challenge. It also includes:
💦Ready-to-use social media templates
💦 A story example and fill-in template
💦 An appeal letter you can send with your holiday cards
💦A free personalized fundraising video we will create for your family

You do not have to fundraise to support this mission. But if you have been looking for a way to do more — and want real, practical help doing it — this guide was built for you.

Read more and download it free: https://hubs.li/Q04jpvdn0

There is strength in numbers. Let's use it to . 🌱

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

05/12/2026

I'm at Annual Meeting this week! Message me to meet up. Would love to catch up in person about all things Shwachman-Diamond Syndrome to .

American Society Of Gene And Cell Therapy, 2026 Annual Meeting, Boston, May 11-15

05/07/2026

This month’s SDS Spotlight is live — and we have big news to share. 🌱

SDS Alliance has received a significant grant from the RTW Foundation, designated for prime editing gene therapy research for Shwachman-Diamond Syndrome. In this month’s video, Eszter explains what this means, how we’re deploying it, and why our approach to research funding matters for the future of SDS therapy development.

Funding doesn’t equal impact. Funding + strategy does.

Watch the video, and read the full story at the link below.
📖 https://hubs.li/Q04fF9Fy0

What does "cure" mean to you? It means something different for everyone — and for a disease like SDS, the answer shapes how we invest in research. We'd love to hear your views.

05/02/2026

This Mother's Day, we're celebrating every woman who shows up for the SDS community — the moms who navigate endless appointments and fight for answers, the researchers working toward a cure, the advocates who refuse to let SDS be invisible. 💗

We just launched our "Girls Just Wanna Have Fun-ding to " t-shirt and tote bag collection, and the first batch is available this weekend only.
Whether you wear it for yourself, gift it to the SDS mom in your life, or just want to show the world what you're fighting for — this one's for you.
Available in multiple styles. After this weekend, both will also be available in our Bonfire store for future orders.
👕 T-shirt: https://hubs.li/Q04fcd2N0
🛍️ Tote bag: https://hubs.li/Q04fccPV0

04/29/2026

We hear you. Privacy matters — especially when you're already navigating so much.

SDS-GPS was built with your trust in mind. Your name never leaves us. No patient list is ever shared. You can withdraw anytime. And your data is only shared with researchers who go through a formal review process.

We're IRB-approved, GDPR-compliant, and committed to the highest encryption standards — because you deserve nothing less.

We just added quality of life surveys to SDS-GPS this month — the first time we're capturing how SDS actually feels day to day, beyond lab results. The window for this first cycle closes April 30.

If you're already on the platform, please log in and complete them. If you're not yet a member, now is a great time to join. Surveys are available in English, Spanish, French, Italian, and German.

Want to know exactly how your data is protected? Read our full privacy guide:
https://hubs.li/Q04dWRfc0

👉 Join or log in: https://hubs.li/Q04dX04J0

Newly diagnosed with Shwachman-Diamond Syndrome? Learn how SDS-GPS protects your privacy while helping advance research and therapies for SDS.

03/06/2026

Do you want to learn more about gene therapy and what it takes to bring them to rare disease patients? Check out this fantastic event for patients by the American Society of Gene and Cell Therapy. It's next week. FREE. Register in the link below.

The Empowering Patients Summit is just one month away! RSVP to secure your spot at this free, virtual event: asgct.org/empowering

02/28/2026

Rare Disease Day reminds us that progress takes sustained commitment — not just awareness, but action.
Our Monthly Giving Allies provide the steady foundation that makes our research acceleration work possible. Every monthly gift — $10, $25, $50 — adds up to real impact: building patient input tools, funding clinical trial readiness, and connecting researchers with the resources they need.
Join our Monthly Giving Allies and help us reach clinical trials by 2030.
💙 https://hubs.li/Q044VXd20

02/27/2026

📊 Did you know? There are over 7,000 rare diseases affecting 300 million people worldwide — but 95% still have no FDA-approved treatment.
SDS is one of them. Here's what you need to know about Shwachman-Diamond Syndrome.
See all our infographics on our media page: https://hubs.li/Q044VS-C0
Together, we're working to change these statistics by accelerating therapy development for SDS. Learn more at https://hubs.li/Q044VRYh0