Resources

One of the more difficult aspects of families and patients fighting a rare disease is finding the right resources. Below you will find our informational video, information on the most current research/studies, and physicians resources.

Newly Diagnosed

Team Telomere knows that the moment you learn the diagnosis of telomere biology disorder, you feel completely isolated and alone. We are here to help, and share in the journey with you, by giving you the resources you need to fight this disease. Please click on our informational video to learn more about TBDs, and follow the link to our Resource Map. This map was created to help you find specialists in your region and beyond. It is a constant work in progress so please be patient with us, if you need any assistance, please email info@teamtelomere.org

Research

Team Telomere wants to make sure you are an educated and empowered advocate, this means having access to the most up-to-date information. To find current research and clinical trials you can visit the US National Library of Medicine’s website. You can also see what the Team Telomere grant has funded by visiting our Physician Resource page.

Clinical Guidelines

The clinical care guidelines for Telomere Biology Disorder-associated medical complications provide background and general clinical guidance as we await comprehensive clinical trials on the management of the multiple complications in TBD/DC.

Learn more about how to receive telomere length testing by visiting Repeat Dx website.

Learn more about a study to identify the unmet needs of individuals and families living with dyskeratosis congenita (DC) and related telomere biology disorders (TBDs) 

Elixirgen therapeutics: Phase I/II Study to Evaluate the Safety and Tolerability of EXG34217 in Patients with Telomere Biology Disorders with Bone Marrow Failure

Patient/Caregiver Resources

Team Telomere believes that though we are rare we are not unique. On this page you will find a list of our partners in advocacy. Whether you are trying to learn how to become a better advocate or looking for assistance we have identified a list to help you wherever you are in your journey.

Financial Support

Miracle Flights – Provides free domestic or international travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need.

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.

Angel Flight – Arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals, and healthcare organizations.

Health Well Foundation – Pedatric Assistance Fund

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

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.

Liver Transplant

General Information for Organ Transplantation

Comprehensive Transplant Guide for Parents

Liver Disease Toolkit

Liver Transplant Resources

American Liver Foundation

UC San Diego Liver Transplant

Medication Alarm App

Medication Assistance

Pulmonary Fibrosis

Pulmonary Fibrosis Foundation

Pulmonary Fibrosis Information

American Lung Association – Pulmonary Fibrosis

Idiopathic Pulmonary Fibrosis Information

Aplastic Anemia

The Aplastic Anemia & MDS International Foundation

Education Resources

Center for Parent Information and Resources

Wright’s Law Website

Yellow Pages for Kids

Additional Support Progams

Peachs Neet Feet  – The mission of Peach’s Neet Feet (PNF) is to provide tangible ways to be compassionate, and inspire others to engage in acts of kindness.

Our Odyssey – An organization for people ages 18-35 impacted by chronic and rare conditions

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