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The resources provided on this page are intended to be used as a starting point for the various needs of SDS families. This list is not comprehensive nor exhaustive of all the resources available, in whole or in part, to SDS families. SDS Research Fund is not in partnership with these organizations. By providing links to these sites, SDS Research Fund does not guarantee, approve, nor endorse the information or products available on these sites.

The Resources provided on this page are not a substitute for the medical care and advise your doctor can provide. Please consult with your physician before utilizing any new resources.

Support Programs
  • Beads of Courage - helps children RECORD, TELL and OWN their stories of courage during treatment for cancer and other serious illness

  • Rare Bear Program - a grassroots community-driven outreach for kids with rare disease; community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids to change the future for kids with rare disease

  • Team Impact - a national nonprofit that connects children facing serious and chronic illnesses to local college athlete teams, forming lifelong bonds and life-changing outcomes

Assistance Programs
Registries to enroll in
  • SDS Registry - a research organization dedicated to accelerating research and treatment for SDS to improve survival and quality of life for all patients with the disease

  • Neutropenia Registry - to establish a global database of treatment and disease-related outcomes for persons diagnosed with SCN; collection of this information will lead to improved medical care and is used for research to determine the causes of neutropenia

Referrals
  • The Magic Foundation - a charitable non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth

  • Boston Children's Hospital - in-depth information on Shwachman-Diamond Syndrome

  • National Organization for Rare Disorders (NORD) - a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them

Made by families, for families
Bone Marrow Registry Drives

Families of individuals with SDS often wonder how they can host a bone marrow registry drive. These registries are important because individuals with SDS may need a bone marrow transplant as a life-saving measure when they begin to show signs of progression into aplastic anemia, myelodysplastic syndrome, or acute myeloid leukemia. Anyone can host a bone marrow registry drive! From parents of individuals with SDS to friends and extended family, the first step to scheduling your drive is to contact a donor registry to get started. SDS Research Fund would be happy to assist you in making this contact.

  • Be The Match - the largest and most diverse donor registry in the world, Be the Match is the connection between patients searching for a cure and life-saving bone marrow donors

  • DKMS - working with families and communities to recruit bone marrow donors and provide patients with second chances at life, DKMS is a leader in the fight against blood cancer

How do I set up a fundraiser to support funding for research on SDS?

SDS Research Fund has experience in hosting many different events, both large and small, and encourages anyone interested in supporting our mission to contact us today. We'll guide you through the steps to setting up a one-time or annual event and can even assist with promotional materials, event costs, and more. Inquire today, commitment free, by contacting us below.

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