** This page is in draft and under construction **
What is TeloNet?
A foreword from Professor Inderjeet Dokal
The increasing recognition of telomere disorders and their association with significant morbidity/mortality, suggests that more coordinated management of patients is desirable. This has led to interested patient groups (e.g. DCAction, Gary Woodward Dyskeratosis Congenita Trust) and professional care providers (e.g. haematologists, respiratory physicians, geneticists) to come together and facilitate collaborative care networks-TeloNet. The inaugural TeloNet meeting took place in London on 11th November 2024. The day included sessions with a particular focus on haematological, respiratory, genetic and hepatic aspects.
TeloNet will be an important vehicle towards the goal of improved diagnosis and harmonized care networks for patients with telomere biology disorders. It may also help facilitate future research with the hope of more targeted and efficacious new therapies.
There are a number of centres associated with TeloNet, which you can find more details of here:
Joining TeloNet
TeloNet was formed to address the need for multidisciplinary monitoring and management and to give TBD patients more confidence about their care. The establishment of clinical, allied HCP and research networks that will enable exchange of expertise and development of referral pathways leading to improved local access to care.
If you are a clinician, health care professional or researcher who is interested in joining this network please contact info@dcaction.org for more information.