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.

Resources for parents and caregivers for themselves. (Put on your oxygen mask first).
 
Resources to deal with anticipatory grief

This resources sheet (PDF with links) was put together by two members of the Fanconi Anemia community and may be helpful to our SDS community as well.

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.

Additional resources are coming soon

Financial and other support for medication and transporation
 
Transportation

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

General

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.

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

CREON: https://www.creon.com/

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]

Additional resources

List compiled by NORD

Peer-to-peer support
 

We have launched a private Facebook group for SDS families and their close supporters, who are interested in honest, mindful, and proactive discussions about SDS, the latest research, and opportunities to get involved and make a difference, called the ACTION TEAM Facebook group. Please join if you would like to get involved.

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Are you looking for local support and connections with patients near you? Reach out to us, and we will help you get connected! You can also find registered patient support organizations listed below. Click on their logos to get to their website.

 

Coming soon: Additional regional Facebook Support Groups and Patient Ambassadors.

Don't see your country represented? Contact us!
We can help you set up a group and even host a simple info page for you.

 North America 
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Canada
US
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Italy
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The Netherlands
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UK
Germany
 Europe