Genetic Alliance UK

Genetic Alliance UK Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare an

We advocate for fast and accurate diagnosis, good quality care and access to the best treatments. We actively support progress in research and engage with decision makers and the public about the challenges faced by our community. We run the campaign, Rare Disease UK and the support network, SWAN UK.

19/08/2026

Weโ€™re continuing our SMA Awareness month campaign โ€œEvery Piece of the Puzzleโ€ with a brief overview of how newborn screening for SMA became a reality ๐Ÿ“ฃ

Read the full blog here ๐Ÿ‘‰ smauk.org.uk/0o9u

There is an exciting opportunity to take part in a research interview study exploring individuals who identify as South ...
19/08/2026

There is an exciting opportunity to take part in a research interview study exploring individuals who identify as South Asian experiences of being diagnosed and living with a hereditary cancer syndrome diagnosis such as Lynch Syndrome and BRCA 1/2 alteration.

Researchers at the University of Leeds want to recruit and interview individuals who identify from an ethnic minority population (South Asian background), who have been diagnosed with a hereditary cancer syndrome diagnosis e.g., Lynch Syndrome and BRCA1/2 alteration and who currently live in the United Kingdom (UK).

Interviews will be on one occasion and will be for approximately up to one hour. Individuals can choose to have the interview either online, telephone, or in-person (if based in West Yorkshire) at a date and time that is convenient for them.

As part of this research, researchers hope to understand individualsโ€™ experiences by sharing photographs that captures their lived experience of a hereditary cancer diagnosis.

This research project has been approved by the University of Leeds, School of Medicine Research Ethics Committee under the reference number SoMREC 4263.

If you are interested in taking part in this research, please contact Saman Hussain at [email protected]. If you have any queries or questions, she would also be happy to discuss this research study with you further through email or a telephone call, so please get in touch through email.

Your chance to help shape the Future for Rare campaign with the Future for Rare Online Webinar!This takes places Wednesd...
17/08/2026

Your chance to help shape the Future for Rare campaign with the Future for Rare Online Webinar!

This takes places Wednesday 2 September 2026, 10:00-12:00 and you can register to join here ๐Ÿ‘‰๏ธ https://www.eventbrite.co.uk/e/future-for-rare-online-webinar-tickets-1993342762863?aff=oddtdtcreator

The Future for Rare campaign has been gathering evidence, experiences and the views of the rare conditions community to shape the future of rare conditions policy in the UK. Our working groups have now developed a set of policy principles covering diagnosis, care coordination, mental health, digital data, advocacy and more.

This webinar is your chance to hear what your community has helped build, and to have a say on the principles before they are shared with governments across the UK.

Join us online to:
๐Ÿ”น Get a live update on the campaign's progress
๐Ÿ”น Hear co-chairs present each group's principles
๐Ÿ”น Learn how these will be shared with governments across the UK
๐Ÿ”น Ask questions and have your say โ€” before the principles are finalised

Anyone with an interest in rare conditions is encouraged to attend!

Get Involved! University of Exeter researchers want to know about the costs of living with a rare disease in the UK.Rare...
12/08/2026

Get Involved! University of Exeter researchers want to know about the costs of living with a rare disease in the UK.

Rare diseases can have a huge financial impact on people and their families, from lost income to extra costs like home adaptations and travel for specialist care.

Better understanding of these costs will help decision-makers recognise the full value of investing in effective treatments. To find out more and to get involved please e-mail Kate Boddy directly at [email protected].

Following the recent announcement that all babies in England will be screened for spinal muscular atrophy (SMA) as part ...
07/08/2026

Following the recent announcement that all babies in England will be screened for spinal muscular atrophy (SMA) as part of the newborn screening programme, weโ€™re resharing two of our relevant recent reports.

Time to Decide: Learning from international approaches to newborn screening decision-making (2025):https://geneticalliance.org.uk/wp-content/uploads/2025/07/Time-to-decide-Learning-from-international-approaches-newborn-screening-decision-making_Highres-3.pdf

Independent Evaluation of the Generation Study: Views of support organisations (2026):https://geneticalliance.org.uk/wp-content/uploads/2026/05/Independent-Evaluation-of-the-Generation-Study_Views-of-support-organisations-1-2.pdf

Find out more on our newborn screening webpage (https://geneticalliance.org.uk/campaigns-and-research/expanding-screening/)

โฐ Last chance to register!Tomorrow is your opportunity to have your say on the future of local care for rare conditions,...
04/08/2026

โฐ Last chance to register!

Tomorrow is your opportunity to have your say on the future of local care for rare conditions, with the Neighbourhood Health Framework Webinar.

๐Ÿ—“๏ธ Wednesday 5 August 2026, 10:00โ€“11:00
๐Ÿ‘‰ Register to join the webinar: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator

Join Genetic Alliance UK and the Department of Health and Social Care to find out how the Neighbourhood Health Framework will re-organise local health and care services in England over the next decade, and why it's so important that rare voices are part of shaping how it's delivered.

The DHSC Neighbourhood Health team will present and take live questions, with a focus on what this means for people living with rare conditions.

Open to anyone with an interest in rare conditions. Don't miss out, register now๐Ÿ‘‰ https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator

๐Ÿ“ข Help shape the future of UK rare conditions policy, with the Future for Rare online webinarThis will take place on Wed...
31/07/2026

๐Ÿ“ข Help shape the future of UK rare conditions policy, with the Future for Rare online webinar

This will take place on Wednesday 2 September 2026, 10:00 - 12:00

Register to join ๐Ÿ‘‰๏ธ https://www.eventbrite.co.uk/e/future-for-rare-online-webinar-tickets-1993342762863?aff=oddtdtcreator

The UK Rare Diseases Framework ends in January 2027 and Genetic Alliance UK's has been working with the rare conditions community on the Future for Rare campaign to decide what comes next.

Eleven working groups, drawing on evidence and lived experience, have each developed three core policy principles covering diagnosis, care coordination, mental health, digital data, advocacy and more.

This webinar is an opportunity for the rare conditions community to help shape the final principles.

Join us online on 2 September 2026 to:
๐Ÿ”น Get a live update on the campaign's progress
๐Ÿ”น Hear co-chairs present each group's principles
๐Ÿ”น Learn how these will be shared with governments across the UK
๐Ÿ”น Ask questions and share your views

Anyone with an interest in rare conditions is encouraged to attend.

โฐ One week to go!Don't miss your chance to have your say on the future of local care for rare conditions, with the Neigh...
29/07/2026

โฐ One week to go!

Don't miss your chance to have your say on the future of local care for rare conditions, with the Neighbourhood Health Framework Webinar

๐Ÿ—“๏ธ Wednesday 5 August 2026, 10:00 โ€“ 11:00
๐Ÿ‘‰ Register to join the webinar: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator

Join Genetic Alliance UK and the Department of Health and Social Care to find out how the Neighbourhood Health Framework will re-organise local health and care services in England over the next decade, and why it's so important that rare voices are part of shaping how it's delivered.

The DHSC Neighbourhood Health team will present and take live questions, with a focus on what this means for people living with rare conditions.

Open to anyone with an interest in rare conditions. Register today to secure your spot: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator

29/07/2026

Join us to hear more about the Neighbourhood Health Framework and its impact on people with rare conditions

๐Ÿ“ฃ Have your say on the future of local care for rare conditions, with the Neighbourhood Health Framework Webinar. ๐Ÿ—“๏ธ Wed...
22/07/2026

๐Ÿ“ฃ Have your say on the future of local care for rare conditions, with the Neighbourhood Health Framework Webinar.

๐Ÿ—“๏ธ Wednesday 5 August 2026, 10:00 โ€“ 11:00
๐Ÿ‘‰ Register for the webinar: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229

Genetic Alliance UK and the Department of Health and Social Care invite you to join this webinar to find out more about the Neighbourhood Health Framework and what it could mean for you.

The Neighbourhood Health Framework sets out how health and care services in England will be reorganised around local communities over the next decade. It has an ambition of building an integrated, multi-disciplinary service that delivers more personalised care closer to where people live, empowers people to lead healthier, more independent lives, and offers genuine choice in how people access support. Visit this page: https://www.gov.uk/government/publications/neighbourhood-health-framework/neighbourhood-health-framework

This is an opportunity to make sure rare voices are included in the delivery of the framework. The DHSC Neighbourhood Health team will present and take live questions, with a focus on what it means for people living with rare conditions and how your feedback can help shape what happens next.

This webinar is open to everyone with an interest in rare conditions. Register today to secure your place: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator

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