Free Downloads and Tools

The following resources may be helpful to you. If you should need any of these items printed and shipped to you, please email your request to

SDS Awareness Cards
These cards are perfect for when people ask
“Shwachman what?!” It gives detailed information on what SDS is and how they can help, including where to find more information on the SDSF website as well as Be the Match.

Email if you’d like some.

SDS Emergency Room Cards
This foldable wallet-size card gives instructions to medical professionals who may come in contact with the patient. It gives standard neutropenic precautions on the front, with information about what SDS is on the back. Inside is space for your own personal information.

Email if you’d like some.

SDS & Me Book
This children’s book is great to help SDS patients and/or peers to understand the ins and outs of living with SDS. We’ll gladly ship printed copies of this book. If interested, please email

New Family Information Packet
Newly diagnosed with SDS? This packet provides you with all kinds of information about SDS, research, family support, fundraising, and a glossary!

SDS Glossary
A medical glossary of all terms associated with Shwachman Diamond Syndrome

Draft Consensus Guidelines for Diagnosis and Treatment of Shwachman-Diamond Syndrome
The medical guidelines for diagnosis and treatment of SDS. We recommending sending a copy of this document to all of the doctors involved with treating SDS patients.

SDSF Brochure
A promotional brochure that explains SDS and the SDSF

Why Care About Rare? Flyer
A great flyer that explains rare diseases and SDS. A great resource for Rare Disease Day (Feb. 28/29).

Organizing SDS Patient Care
Instructions, templates, and forms to organize a binder for SDS patients’ medical information

To view more resources, check out our Helpful Links page and our Videos page.


Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
NORD 2021 Platinum Member
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