The second edition Telomere Biology Disorders: Diagnosis and Management Guidelines have been officially published. This is a comprehensive reference manual for patients, physicians, and researchers. These updated guidelines are the result of a multi-disciplinary international collaboration between clinicians and scientists united by the goal of improving the lives of people with Telomere Biology Disorders and […]
To help raise awareness of rare disease dyskeratosis congenita, Julian’s mom Mayra has kindly shared his journey through 4 stem cell transplants this Rare Disease Day. At the age of 3, our son was diagnosed with a rare genetic disorder called, dyskeratosis congenita. We were really fortunate our search led us to the Jimmy Fund […]
This Telomere Biology Disorder Awareness Month (TBD Month) we have a guest blog from Colleen, Team Telomere President & Chair of Legacy. Colleen is kindly sharing her families’ story from unexpected diagnosis, to health care journeys, to the strength she has found in the Team Telomere community. If you would’ve told me 15 years ago […]
To mark Rare Disease Day, we have a guest blog from Mike who is kindly willing to share his experience with familial dyskeratosis congenita. Hello, my name is Mike and I have a rare disease. It is called Dyskeratosis Congenita (DC) and it runs in my family. My father and my uncle (his twin) had […]
Now in its 12th year, Rare Disease Day will be celebrated globally on February 29 2020. Here we explain why we want to get involved, and how you can show your support! Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness amongst the general […]
Geraldine, Director of Clinical Research and Development, shares her perspective on scientific and medical research into telomere biology, that could be useful for those in the Telomere Biology Disorder (TBD) community. For this article, I chose to write a little bit about the different categories or ‘flavors’ of scientific and medical research that are relevant […]
In this special guest blog Katie Stevens, Executive Director of Team Telomere, shares her story of learning about telomeres, telomere biology disorders and becoming a member of the powerful community she now plays a leading role in. Before October 2012, I had only heard telomeres casually mentioned in a biology class… maybe? Little did I […]
Team Telomere, in collaboration with RepeatDx, have just launched a brand-new video explaining telomere biology disorders. We are very pleased to be able to share with you the new Team Telomere video launched this week! The video runs through what telomeres are, what causes telomere biology disorders, what the symptoms can be and how they […]