Newly Diagnosed
Team Telomere was founded to provide information and support to every person impacted by Telomere Biology Disorders. We know that receiving a diagnosis of telomere biology disorder can be isolating and filled with overwhelming emotions. We are here to help and share in the journey with you by giving you the resources and community you need. If you need any assistance, do not hesitate to email info@teamtelomere.org. Remember, you are never alone!
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.
Telomere Biology Disorders: Diagnosis and Management Guidelines
Our understanding of Telomere Biology Disorders is advancing every day. Our most comprehensive and up-to-date resource is our Second Edition Diagnosis and Management Guidelines. These guidelines are meant to support and provide information to patients, physicians, and researchers. Please consider reading these guidelines and sharing them with your care team:
Care Package
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.
Join our Patient Registry
We are working towards advancing our understanding of Telomere Biology Disorder with the goal of developing effective and accessible treatments and cures. We have partnered with RARE-X to gather, access, and share data with global researchers, clinicians, and drug developers. This is vital in accelerating Telomere Biology Disorder research. Please read more and join our patient registry.
Telomere Length Testing
Flow FISH provides a measurement of average telomere length in cells of leukocyte (white blood cell) subsets and is the only test that is clinically available in certified labs and validated for the diagnosis of TBDs (see Chapter 3 of our Diagnosis and Management Guidelines, Diagnosing Telomere Biology Disorders). Telomere length testing laboratories certified through the Clinical Laboratories Improvement Amendments or CLIA, which govern testing on human subjects, are able to measure telomere lengths according to standards accepted by medical professionals.
If you have questions regarding clinical telomere length testing, refer to the resources section of our Diagnosis and Management Guidelines or email info@teamtelomere.org.
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.
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
Pulmonary Fibrosis
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
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
Livestrong Fertility – Provides reproductive information, resources, and financial support to survivors whose cancer and its treatment present risks to their fertility.
Financial Advocacy
Team Telomere knows that it can be overwhelming to navigate the financial components of medical care and treatment. We have designed the following one-pager and video to serve as a tool to understand financial literacy and the resources that may be available to you:
Additionally, we have compiled several helpful resources to help you be the best financial advocate for yourself:
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 – Pediatric 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
GoodRx – tracks prescription drug prices in the United States and provides free coupons for discounts on medications
Glossary of Health Coverage and Medical Terms – a helpful glossary with many commonly used terms
U.S. Department of Health and Human Services – offers state-by-state financial assistance programs
Team Telomere is greatly thankful to Global Genes for their generous support of this resource through their Financial Advocacy in Rare (FAIR) Grant.
COVID Resources
Vaccines & Variants Education Webinar
A live webinar presented by Dr. Sharon Savage covering Covid-19 Vaccines and Variants. View the slideshow created by Dr. Sharon Savage by clicking the button below, or you can watch the recorded webinar.
COVID Treatments Education Webinar
Treatments for COVID-19 with Dr. Sharon Savage. Team Telomere looks to always have the most up to date science and education available to ensure you can make the best choices for yourself with your medical team. This session was recorded and then recording stops for those in attendance to have our regular Family Chat question sessions for all things TBD/DC.
Resources for Masks:
Duke Today: Research Finds Masks Can Prevent COVID-19 Transmission in Schools
CNN Health: School openings so far reveal science is right – masking works
Mayo Clinic: Benefits of kids wearing masks in school
American Academy of Pediatrics: Children Ages 2 and Up Who Aren’t Fully Vaccinated Should Continue to Wear Face Masks
American Academy of Pediatrics: Masks encouraged for camp, child care, school to prevent COVID-19
Baltimore Sun: Keep the mask mandate for kids under 12 until they have access to a vaccine
CDC: Guidance for COVID-19 Prevention in K-12 Schools
Baltimore Sun: Until there’s a vaccine for kids under 12, masks must be required in Md. schools
American Academy of Pediatrics urges in-person learning, masking in updated guidance on safe schools