@dcaction.bsky.social
UK Charity number 1167150 Supporting people living with Telomere Biology Disorders
The RareCare survey is also open to Healthcare Professionals working in Rare Diseases
30.10.2025 15:49 — 👍 0 🔁 0 💬 0 📌 0
The Department of Health and Social Care want to understand the real life experiences of people who live with Rare Conditions. Can you help by completing the RareCare survey? form.jotform.com/252324831142...
30.10.2025 15:40 — 👍 0 🔁 0 💬 1 📌 0
At the Manchester Rare Conditions Centre, in partnership with the NIHR Manchester Biomedical Research Centre, we believe that people with lived experience of rare conditions are essential partners in everything we do
21.08.2025 14:34 — 👍 0 🔁 0 💬 0 📌 0
Please join Claire and for coffee and intel about DCAction www.justgiving.com/page/claire-...
02.08.2025 09:57 — 👍 0 🔁 0 💬 0 📌 0
Please support Jemma and The Pentorr Limpets 🏊
www.justgiving.com/page/dcactio...
Listen to our Rare Voices podcast to hear from people living with rare conditions about the challenges they face – and overcome.
super-rare.org/podcast
This project is funded by @tnlcommunityfund with thanks to players of The National Lottery.
A picture of Jane and friends arriving in Santiago de Compostela
She made it!!!
www.justgiving.com/page/jane-pa...
DC Action and The AAT are offering a suite of webinars designed to help families with children diagnosed with rare conditions.
www.theaat.org.uk/.../webinar-....
www.theaat.org.uk/.../webinar-....
www.theaat.org.uk/.../webinar-....
The England Rare Diseases Action Plan 2025 has recommendations that are music to our ears. What we need to know is how we can help to make them happen www.gov.uk/government/p...
03.03.2025 14:47 — 👍 3 🔁 1 💬 1 📌 0Please join DC Action and The Gary Woodward Dyskeratosis Congenita Trust for a community support meeting on Thursday 3rd April
DC/TBD patients, families and carers can register here
www.tickettailor.com/events/dcact...
What better way to join in with Super Rare our annual fundraising campaign and celebrate Rare Disease Day, than becoming an Alpaca Farmer?
Raise £200 we’ll send you a Super Rare t-shirt.
www.eventbrite.co.uk/e/1203161361...
Please join DC Action and the Gary Woodward Dyskeratosis Congenita Trust, as we come together for another community support meeting.
www.tickettailor.com/events/dcact...
@jaykaypee.bsky.social
Multidisciplinary care for Rare Diseases is SO important. If you are a patient, carer, healthcare professional, policymaker, or represent a patient organisation, these folks want to hear from you. Please complete this survey rarediseaseqs.org
@jaykaypee.bsky.social
03.12.2024 14:35 — 👍 0 🔁 0 💬 0 📌 0Multidisciplinary care for Rare Diseases is SO important. If you are a patient, carer, healthcare professional, policymaker, or represent a patient organisation, The Rare Disease Quality Statement Steering Group want to hear from you. Please complete this survey rarediseaseqs.org
03.12.2024 14:34 — 👍 1 🔁 0 💬 0 📌 0
Lots of Telomere talk at BTS 2024 @btsrespiratory.bsky.social
A little aide memoire here
DC Action held the first TeloNet meeting yesterday to bring together clinicians,scientists and patients to improve services for people living with Telomere Biology Disorders. It was a great success!!! Watch this space. dcaction.org
13.11.2024 15:43 — 👍 2 🔁 1 💬 0 📌 0
