iiinova — where your digital self keeps evolving

DCAction @dcaction.bsky.social · 30/10/2025

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...

form.jotform.com

National Survey Questionnaire

Please click the link to complete this form.

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DCAction @dcaction.bsky.social · 21/08/2025

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

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DCAction @dcaction.bsky.social · 23/05/2025

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 – Super Rare – But not alone

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DCAction @dcaction.bsky.social · 23/03/2025

She made it!!! www.justgiving.com/page/jane-pa...

A picture of Jane and friends arriving in Santiago de Compostela

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DCAction @dcaction.bsky.social · 12/03/2025

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-....

theaat.org.uk

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DCAction @dcaction.bsky.social · 03/03/2025

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...

gov.uk

England Rare Diseases Action Plan 2025: main report

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DCAction @dcaction.bsky.social · 03/03/2025

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...

tickettailor.com

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...

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DCAction @dcaction.bsky.social · 16/01/2025

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...

eventbrite.co.uk

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!

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DCAction @dcaction.bsky.social · 03/12/2024

@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

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.

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DCAction @dcaction.bsky.social · 03/12/2024

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

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.

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DCAction @dcaction.bsky.social · 01/12/2024

Lots of Telomere talk at BTS 2024 @btsrespiratory.bsky.social A little aide memoire here

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DCAction @dcaction.bsky.social · 13/11/2024

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

dcaction.org

DC Action: Dyskeratosis Congenita Advocacy / Education / Support

DC Action is a charity devoted to advocacy, education, and support for Dyskeratosis Congenita

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