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Team Telomere is partnering with Citizen Health!

We are thrilled to launch a new digital natural history study for Telomere Biology Disorders! Signing up takes just five minutes - and you can securely organize your medical records in one place while playing a direct role in advancing research!

To kick things off, we are launching a 100 Participants in 100 Days campaign. Be one of the 100!
Learn More & Sign Up Today
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Maine mom pens son’s journey with rare genetic disease

Read article here.
Heidi Carson Reflects on Widowed Parenting and Finding Meaning Through Rare Disease Advocacy

Heidi Carson Reflects on Widowed Parenting and Finding Meaning Through Rare Disease Advocacy

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New Drug Regimen Proves Ideal for Patient with Rare Genetic Disease

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Gabby’s Camp Quality Story: Doing more than she thought she could

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RARE Health Equity Report: Building a More Inclusive Rare Disease Community

Download here.
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Supporting families affected by Telomere Biology Disorders, including Dyskeratosis Congenita.

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