Parent & Caregiver Resources
Talking to and supporting kids through the physical and mental challenges of SDS
Explaining blood, bone marrow, and transplant
This is an amazing education video published by our friends at the Fanconi Anemia Research Fund (FARF) about How to Talk to Children About Fanconi Anemia (FA). FA is a genetic bone marrow failure syndrome with many similarities to SDS, and most of the content of this video is directly applicable to the SDS community! It includes explanations about the blood, bone marrow, and transplant, and suggestions of HOW to talk to children about these topics.
Ideas for supporting learning, cognitive, and behavioral challenges
https://www.understood.org - A great resource to learn how to deal with executive functioning challenges and other types of learning differences. Useful for both caretakers, teachers, and people experiencing the challenges themselves. Here is an example of search results for executive functioning.
Ideas for supporting children and their siblings
Plus, check out our kids' corner with resources just for kids!
Gene-Based Diagnosis 101: How to Successfully Navigate the Diagnostic Journey
Resources for parents and caregivers for themselves.
(Put on your oxygen mask first).
Resources to deal with anticipatory grief and loss
This resources sheet (PDF with links) and list with additional resources was put together by members of the Fanconi Anemia community and may be helpful to our SDS community as well. Sharing here with their permission.
A great resource with webinars, blogs and a podcast for caregivers. Their mission is to encourage, empower, and equip family caregivers with practical tools and supportive communities, so no caregiver does this alone. They have a free app, a podcast, and webinars as ways to support caregivers and provide practical resources.
Connecting with SDS families in your area "who get it"
Check out our peer-to-peer page
Family planning discussions, including IVF
We have a private facebook group to support families going though IVF. Please contact us at connect@SDSAlliance.org to learn more.
Financial and other support for medication and transporation
Miracle Flights – Provides free domestic or international travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need.
Angel Flight – Arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals, and healthcare organizations.
Julia’s Wings – The Julia’s Wings Foundation (JWF) is a 501(c)(3) non-profit organization with the mission of providing assistance to families of children with the life threatening hematological disease
Health Well Foundation – Pedatric Assistance Fund
Got Transition – Helps to improve the transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
Healthcare advocacy resources for patients: These are some organizations that specialize in helping patients navigate the US healthcare system to help them get access to insurance, specialists, medications, services, etc. We have no first-hand experience with these organizations, so please use sound judgment as you engage with them.
Bone Marrow/Stem Cell Transplant
Be the Match (National Marrow Donor Program) – Nonprofit organizations dedicated to creating an opportunity for all patients to receive bone marrow or umbilical cord blood transplant when needed.
Bone Marrow and Cancer Foundation – Patient aid program that provides coverage for many costs associated with bone marrow, stem cell or cord blood transplant.
BMT InfoNet – The BMT InfoNet Patient Assistant Fund (PAF) assists patients and caregivers with living expenses during treatment.
Children’s Organ Transplant Association (COTA) – Provides fundraising assistance for children & young adults needing bone marrow transplants. Also advocates for marrow, organ and tissue donation
DKMS: We Delete Blood Cancer – A non-profit advocacy group that works to raise awareness of the need for donors for hematopoietic stem cell transplantation, which people with blood cancers need for treatment.
Information on frequently used medication
Clinical decision guide by AvoMD for physicians for pancreatic enzyme replacement therapy (PERT) - patients can point their provider to this resource to optimize their care. Provided by Mission:Cure.
Medication copay assistance programs (US)
CREON On Course support program - offers copay assistance and sometimes provides ADEK vitamins and nutritional supplements. [US only, as far as we can tell]
Zenpep Z-Save Patient support program - - offers copay assistance and sometimes provides ADEK vitamins and nutritional supplements. [US only, as far as we can tell]
List compiled by NORD