Join our SDSF Family

Whether you are going through the SDS diagnosis, are newly diagnosed or have been dealing with SDS for a while, JOIN our SDSF family! Upon joining, we will add you to the SDSF e-newsletter list so you can stay informed.

**If you have already joined our SDS family and your contact information (address, phone number, email address, etc.) has changed, visit the update your information page.

Join Our SDSF Family

    Your First Name

    Your Last Name

    Your Mailing Address

    Your Phone Number

    Your Email

    Your Connection to Shwachman Diamond Syndrome

    Your Message or Question(s)

    SDS Patient’s Name

    SDS Patient’s Age

    What phase of the diagnosis process are you currently in?


    Enter the Above Text(*)

    By clicking Send, I verify that I am joining as either 1) myself as an SDS patient, 2) my child as an SDS patient or suspected patient, or 3) my spouse/partner as a new patient with the Shwachman Diamond Syndrome Foundation. I understand that joining will provide me with the SDSF e-newsletter and give the SDSF a way to contact me.

    We strongly recommend that every SDS patient registers with the SDS Registry ( so more data is available for doctors to research for a cure! It is important to know that because of privacy laws, the SDSF and the SDS Registry can NOT share information. Signing up to be a part of our SDSF family does NOT register you with the SDS Registry.


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