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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- Following 365
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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
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And check out our brand-new Voice of the Patient Report for SDS at SDSAlliance.org/pfdd#vop
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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
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Find the report at SDSAlliance.org/pfdd#vop
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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
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Start an online fundraising page today. sdsalliance.org/fundraise
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SDS Alliance has received a grant from RTWF for prime editing gene therapy research for Shwachman-Diamond Syndrome.
Not just a check. Structured partnership. Milestones. Accountability.
Funding doesn’t equal impact. Funding strategy does.
👉 hubs.li/Q04fF2WF0
#CureSDS
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For me, a cure means not having to worry about leukemia anymore. It's knowing that my daughter has a shot at living her life to its full potential.
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Girls just wanna have fun-ding to #CureSDS 💚
Celebrating every woman fighting for a rare disease cure this Mother's Day. First batch available this weekend only.
👕 hubs.li/Q04fcjhd0
🛍️ hubs.li/Q04fcjmK0
#ShwachmanDiamond #RareDisease #MothersDay #CureSDS
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It looks like for the bags, black is sold out in several styles. If you don't find what you need, try again in a few days. bonfire.com/just-wanna-have-…
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Quality-of-life surveys open through April 30. 5 languages.e registry enrollment.
For SDS-GPS, we built trust through: IRB, data security, and more.
Full privacy guide link in comments. April 30.
Full privacy guide link in commnets.
Join: hubs.li/Q04dYV5-0
#CureSDS
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Want to know exactly how your data is protected? Read our full privacy guide:
sdsalliance.org/post/your-da…
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What lab tests can't tell us about #ShwachmanDiamond:
→ Energy levels
→ Thinking & memory
→ Worry & mood
→ Feeling connected
We just added PROMIS® Quality of Life surveys to SDS-GPS. 5 languages. Building toward clinical trials by 2030.
🔗 hubs.ly/Q049nhf60
#CureSDS
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📖 Read the full story on our blog: sdsalliance.org/post/shwachm…
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📊 Did you know? There are over 7,000 rare diseases affecting 300 million people worldwide — but 95% still have no FDA-approved treatment. Let's change the statistics for SDS and all.
See all our infographics on our media page: hubs.li/Q044VP-70
#RareDiseaseDay #CureSDS
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Rare Disease Day reminds us that progress takes sustained commitment.
Our Monthly Giving Allies provide the steady foundation that makes our research acceleration work possible.
Join us to help us reach clinical trials by 2030.
💙 hubs.li/Q044W1940
#RareDiseaseDay #CureSD
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This Rare Disease Day, we're shining a light on Shwachman-Diamond Syndrome.
Here is what SDS looks like and why research matters for every family in our community.
💙 Please share Let's take action, together.
#RareDiseaseDay #CureSDS
hubs.li/Q044PPWB0
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There is nothing quite like the warmth of a community coming together for a common goal. 🦓✨
Our 2026 Rare Disease Day T-shirts are officially here!
🚨 ORDER BY FEB 15 to ensure your shirt arrives in time to celebrate with us: hubs.li/Q042cg1l0
#CureSDS #RareDiseaseDay
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T-shirts, hoodies, long sleeves, in many colors available. Kids' sizes too. Order today! bonfire.com/curesds-rdd
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