It is estimated that 300 people have been diagnosed with a Telomere Biology Disorder in the UK but this is likely to be an underestimate, the true prevalence is unknown. DC Action have supported approximately 50 people in the last year.

Most people with TBDs remain undiagnosed through lack of awareness and routinely available diagnostic tests.

Many are wrongly diagnosed and, as a result, receive inappropriate and inadequate treatment.

Those affected have multiple medical needs and require access to multidisciplinary care; from haematologists, respiratory physicians and liver specialists and are likely to need access to oral medicine, dermatology, opthalmology, orthopaedics and cancer services at some time during their lives.

Medical, financial and mobility problems often make it impossible for patients to attend multiple clinics and relevant knowledge and expertise is often unavailable.

A substantial number of doctors from the services needed by patients will have little or no knowledge of Telomere Biology Disorders.

When asked in our Rare Voices report, 59% disagree that general NHS professionals (outside of their core medical team) have knowledge of their condition.

"Isolated and under-supported generally in comparison to those patients with cancer/leukeamia". - Rare Voices Report

By donating to this appeal you are supporting DC Action to address these challenges and bring Clinicians and Patients Together.

In November DC Action we will be holding a networking meeting for clinicians and physicians from various disciplines.

By donating you'll help us;

- bring together physicians from various disciplines

- establish and develop a network to improve local access to multidisciplinary care

- facilitate clinical knowledge exchange and build expertise

If you would like to do your own fundraiser and would like a copy of our fundraising pack or if you need any support, please get in touch with Hannah at info@super-rare.org