DCAction
@dcaction.bsky.social
UK Charity number 1167150 Supporting people living with Telomere Biology Disorders
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...
National Survey Questionnaire
Please click the link to complete this form.
form.jotform.com
October 30, 2025 at 3:40 PM
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...
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
August 21, 2025 at 2:34 PM
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
Please join Claire and for coffee and intel about DCAction www.justgiving.com/page/claire-...
Claire's fundraiser for DCAction Cake & Coffee
Help Claire Garrity-Yates raise money to support DCAction
www.justgiving.com
August 2, 2025 at 9:57 AM
Please join Claire and for coffee and intel about DCAction www.justgiving.com/page/claire-...
Please support Jemma and The Pentorr Limpets 🏊
www.justgiving.com/page/dcactio...
www.justgiving.com/page/dcactio...
Penntorr Limpets Annual Sea Swim
Help Jemma Williams raise money to support DCAction
www.justgiving.com
August 2, 2025 at 9:51 AM
Please support Jemma and The Pentorr Limpets 🏊
www.justgiving.com/page/dcactio...
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.
super-rare.org/podcast
This project is funded by @tnlcommunityfund with thanks to players of The National Lottery.
Podcast – Super Rare – But not alone
super-rare.org
May 23, 2025 at 10:52 AM
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.
super-rare.org/podcast
This project is funded by @tnlcommunityfund with thanks to players of The National Lottery.
She made it!!!
www.justgiving.com/page/jane-pa...
www.justgiving.com/page/jane-pa...
March 23, 2025 at 4:13 PM
She made it!!!
www.justgiving.com/page/jane-pa...
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-....
www.theaat.org.uk/.../webinar-....
www.theaat.org.uk/.../webinar-....
www.theaat.org.uk/.../webinar-....
www.theaat.org.uk
March 12, 2025 at 3:06 PM
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-....
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...
England Rare Diseases Action Plan 2025: main report
www.gov.uk
March 3, 2025 at 2:47 PM
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...
Please 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...
DC/TBD patients, families and carers can register here
www.tickettailor.com/events/dcact...
Select tickets – Back to Basics - general information about living with DC/telomere biology disorders – Zoom
Please join DC Action and The Gary Woodward Dyskeratosis Congenita Trust, as we come together for another community support mee...
www.tickettailor.com
March 3, 2025 at 2:41 PM
Please 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...
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...
Raise £200 we’ll send you a Super Rare t-shirt.
www.eventbrite.co.uk/e/1203161361...
Be an Alpaca Farmer in support of DC Action
Come learn how to care for alpacas and support DC Action at our fun event - Be an Alpaca Farmer!
www.eventbrite.co.uk
January 16, 2025 at 3:49 PM
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...
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...
www.tickettailor.com/events/dcact...
Select tickets – ‘Feedback from TeloNet, patient passports and community support planning for 2025’ – Zoom
Please join the Gary Woodward Dyskeratosis Congenita Trust and DC Action, as we come together for another community support mee...
www.tickettailor.com
December 5, 2024 at 2:01 PM
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...
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
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
Developing QS for rare disease across the rare disease community
Developing quality statements for rare disease via consensus across the rare disease community.
rarediseaseqs.org
December 3, 2024 at 2:36 PM
@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
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
December 3, 2024 at 2:35 PM
Multidisciplinary 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
Developing QS for rare disease across the rare disease community
Developing quality statements for rare disease via consensus across the rare disease community.
rarediseaseqs.org
December 3, 2024 at 2:34 PM
Multidisciplinary 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
December 1, 2024 at 4:35 PM
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
DC Action: Dyskeratosis Congenita Advocacy / Education / Support
DC Action is a charity devoted to advocacy, education, and support for Dyskeratosis Congenita
dcaction.org
November 13, 2024 at 3:43 PM
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