Shwachman-Diamond Syndrome Registry

Dedicated to accelerating research and treatment for Shwachman-Diamond Syndrome (SDS).

[Shwachman-Diamond Syndrome Registry @SDSregistry]

We wish our SDSR participants and their families a very happy Thanksgiving.🦃🍁

We are so appreciative of your constant support for the SDS Registry!

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Hello👋Would you like to hear more about what the #SDS Registry is up to?🔬

Please visit https://t.co/6AtwS9S9VQ and click on the Patients and Families Tab. Here, you will find the Presentations link where you can learn about #SDSR updates we shared this summer at #CampSunshine!

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Boooo👻 Happy Halloween, SDSR Families! We hope you have a fun and safe day!🎃😄

[Shwachman-Diamond Syndrome Registry @SDSregistry]

🎉We are excited to share our NEW video about the SDS Registry for families! Please check it out to learn more about what it means to be a part of the #SDSR and our hope to find a cure for Shwachman-Diamond Syndrome.🔬🧬📚 We are stronger together! #SDS

https://t.co/YY1TQrKWW7

[Shwachman-Diamond Syndrome Registry @SDSregistry]

The #SDSR has a new way to easily access our resources for families and providers: https://t.co/6slvszvBBd.

Use the link or the connected QR code to check it out!

Here, you can find #educational resources, SDSR #publications, how to send #samples, and much more.📖🧬

[Shwachman-Diamond Syndrome Registry @SDSregistry]

The #SDSRegistry is a resource for families to learn more about #SDS.

Check out our website (https://t.co/z3pKjreABP) to watch recorded presentations on different aspects of SDS such as genetics, blood complications, and transitioning to adult care to name just a few.🧬🩸

[Shwachman-Diamond Syndrome Registry @SDSregistry]

The #SDSR wishes our families a happy and safe #Labor #Day weekend!💫😄☀️

[Shwachman-Diamond Syndrome Registry @SDSregistry]

#Medical #records help us to diagnose, improve treatment, and advance our understanding of #SDS so we can work towards a cure!📖

Medical Releases can help our team obtain records.☺️

If you would like to share one with the #SDSR, please ✉️: [email protected]

[Shwachman-Diamond Syndrome Registry @SDSregistry]

😄Have you met Lois?

Lois started with the #SDSRegistry team in July and we are so happy to have her!

Please contact Lois to learn more about #consenting to the registry, sending #samples, and sharing #records.🔬

✉️[email protected]

[Shwachman-Diamond Syndrome Registry @SDSregistry]

👋Have you met Diana?

Diana started with the #SDSRegistry team in July and we are so happy to have her!

Please contact Diana to learn more about #consenting to the registry, sending #samples, and sharing #records. 🧬

✉️[email protected]

[Shwachman-Diamond Syndrome Registry @SDSregistry]

@v_dhree @BostonChildrens Always happy to help!

[Dhree Ke Papa 💕 @v_dhree]

Thank you @SDSregistry @BostonChildrens for lovely support on each query. You guys are awesome. More power to you!!!

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Hello!👋

Do you have a BMB coming up in late August or in the fall?

Let the #SDSRegistry team know!😊

Please see below for more information about how to request a kit or send in clinical information.

[Shwachman-Diamond Syndrome Registry @SDSregistry]

"SDS will always be a part of my life, but that doesn't define who I am" -Max, an SDS patient

Hear more from Max on the #SDSR Facebook page. Huge thank you to Max for sharing his experiences with #SDS and for providing some tips on blood draws!

https://t.co/Vd6YDv9qZu

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Are you a physician, patient, or family member with questions about #SDS?

Visit the "Contact us" tab on https://t.co/z3pKjrf8rn to submit an inquiry.

The #SDSR board is composed of experts Akiko Shimamura, MD, PhD, Kas Myers, MD, Coleman Lindsley, MD, PhD, and Chris Reilly, MD.

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Finally, more information on #neurocognitive concerns in #SDS patients presented by Dr. Jane Koo.

Reach out with any questions!
⌨️https://t.co/z3pKjreABP
✉️[email protected]

Thank you all!

[Shwachman-Diamond Syndrome Registry @SDSregistry]

📣👏Excited to share handouts from #SDSR presentations at @GoCampSunshine. Thank you to Dr. Jane Koo for putting these summaries together!

First up: #hematologic considerations.

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Next up: #GI and #pancreatic issues presented by Dr. Amit Grover.

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Wonderful presentations and Q&A from expert #SDS physician scientists at @GoCampSunshine 🧬🔬

Thank you @ABertuch, @KMyersBMT, @sethcorey, @ShimamuraLab, @Chris_R_Reilly and all other presenters!

[Shwachman-Diamond Syndrome Registry @SDSregistry]

Happy to be celebrating #SDSAwarenessDay at @GoCampSunshine 😊☀️

Presentation summaries coming later today!