DC Action

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

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 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…

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…

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

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

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…

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

Help us deliver expert psychological support super-rare.org/get-support/

Were you provided with access to psychological support when you or your loved one was diagnosed? One of the recommendations from our Rare Voices report is that psychological support should be a part of the care plan for every patient. Tag your MP in this post if you agree!

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

By fundraising you will be providing that support when people need it most. 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…

@fanconihope @PNHSupport What do you wish people understood about your Super Rare condition? "That pain is hard to deal with and that it sometimes takes time to settle" - Naomi, living with Sickle Cell @CAnaemiaNetwork #RareDiseaseDay #RareDiseaseDay2024

@fanconihope What do you wish people understood about your Super Rare condition? "I can't predict how I will feel day to day or what certain activities will do to my fatigue levels" Jovita, living with PNH @PNHSupport #RareDiseaseDay #RareDiseaseDay2024

What do you wish people understood about your Super Rare condition? "I'm still me." - Paula, living with Dyskeratosis Congenita, a rare genetic disorder #RareDiseaseDay #RareDiseaseDay2024

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

What do you wish people understood about your Super Rare condition? "I wish they would understand that every day is different that we are not lazy and that we are all trying our best.....'- Claire #RareDiseaseDay #RareDiseaseDay2024 @AplasticAnaemia

What do you wish people understood about your Super Rare condition? @fanconihope @PNHSupport @CharitySdsuk @CAnaemiaNetwork @AplasticAnaemia @DC_Action