Are you living with DC or one of the related or similar rare conditions represented by our partner charities? Join in with our Super Rare campaign this month and EARN YOUR TEE! Visit super-rare.org

One of the biggest worries for people affected by a rare condition can be financial. That's why we're working with an expert benefits advisor to provide advice. super-rare.org/benefit-advice…

By fundraising you will be providing that support when people need it most. super-rare.org

You can make sure we’re here to provide Emotional wellbeing support when people need it most. super-rare.org

Very important for those with telomere disorders and their doctors to be aware of medications to avoid

If you've been fundraising, don't forget to donate the money you've raised via our Super Rare page. Thank you to everyone who has been fundraising for us this February and March. justgiving.com/campaign/super…

Join DC Action and The Gary Woodward Dyskeratosis Congenita Trust for a community support group meeting, specifically for patients with Dyskeratosis congenita and those who care for loved ones with the condition. tickettailor.com/events/dcactio… #DyskeratosisCongenita

Support people affected by dyskeratosis congenita, with every peak you climb. During this challenge you'll take on the three highest peaks in England, Scotland and Wales. For more details see theaat.org.uk/Event/3-peaks-… #dyskeratosiscongenita #dcaction

DC Action will be at Cambridge University on Sat 4th May. If you're in the area come along and say hello. eventbrite.co.uk/e/galactic-gen…

A new study, by @M4RareDiseases , has identified seven ‘red flags, that point to a patient having an underlying #rarecondition. The findings have the potential to aid earlier detection of ‘rare disease’ in general practice. Read the full report now. ojrd.biomedcentral.com/articles/10.11…

Join the Gary Woodward Dyskeratosis Congenita Trust and DC Action, as we come together to provide the Dyskeratosis Congenita/telomere biology disorders community a valuable session with Dr Michael Gibbons on the importance of looking after your lungs tickettailor.com/events/dcactio…

A great day at our first Telonet meeting. Thank you to everyone who is attending today. #telonet #DCAction