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.
Informing those who come in close and/or frequent contact with individuals affected by Shwachman Diamond Syndrome can be a challenge. It can be a lot for friends, family, and others to process. This SDS Awareness Card is a great resource to give to anyone who has a need or want to know more about SDS.
As a multi-system disorder, explaining Shwachman Diamond Syndrome isn't an easy elevator speech- it's more of an explanation meant for a road trip. When you don't have the time to give a full explanation of SDS, consider closing your brief conversation with this awareness card, encouraging others to learn more for themselves, and also how they can help. Click here to download.
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
Wabi sterilizer HOPE charity program - no or low cost home sterilizer units for parents with kids who have medical needs
ViaCord Sibling Connection Program - a directed donor program to help those families with the greatest need, regardless of their ability to pay for cord blood collection
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
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
Awareness Card - a great printable to have on hand to help explain SDS to friends, family, or even a stranger on the street; best printed on cardstock, meant to be printed/assembled as front-and-back sided
ADEK refrigerator cheat sheet - a handy reference of some of the highest naturally occuring sources of the fat-soluble vitamins
Letter to family and friends re: diagnosis - establishing an open-dialoge with family and friends early on can set you up for receiving the support your family needs
Letter to Family and Friends SAMPLE.pdf
Letter to Family and Friends TEMPLATE.docx
Letter to Child Care families - this letter is a great way to introduce your child to a new day care, class, team, etc. and to let parents of your child's peers know how their choices impact the health of others
Letter to Child Care Families SAMPLE.pdf
Letter to Child Care Families TEMPLATE.docx
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
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.