After a long wait following the BNTVA's provision of information to demonstrate the needs within the British nuclear community, we are pleased that the Association has just been accepted as a member of Genetic Alliance UK.

The BNTVA understands issues surrounding living with rare conditions as we all have first-hand experience of misdiagnosis, misunderstanding and long pathways to diagnosis whether for ourselves and/or family members. Not being understood by medical professionals at a time when desperate help is required is beyond frustrating, affecting one's quality of life and the quality of life of those around the individual. 

On top of this, raising issues surrounding participation within the Commonwealth atmospheric testing and radiation clean-ups with GPs and through secondary care hospital specialist referral processes can be demoralising and detrimentally affect the patient experience.

This is why the BNTVA knew it was worth applying to join the Genetic Alliance UK on behalf of the British nuclear community. 

Genetic Alliance UK, run by staff with a background in natural and social sciences, states that,

"We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education. 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."

In brief, Genetic Alliance UK's strategy includes:

DRIVING PROGRESS

Improving outcomes for everyone affected by genetic, rare and undiagnosed conditions through evidence-based influencing and campaigning.

BUILDING OUR COMMUNITY

Supporting and developing communities by providing an excellent range of services to our members, new groups and everyone affected by these conditions.

BUILDING GREATER AWARENESS

Creating the impetus for positive action by increasing understanding within the general public, the health and social care community, and with policy makers.

BUILDING OUR ORGANISATION

Maximising our capacity to deliver a programme of sustainable growth, continued improvement and development.

Genetic Alliance UK runs two long-term projects:

Rare Disease UK: A campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that people and families living with rare conditions have access to a final diagnosis, coordinated care and specialist care and treatment.

SWAN UK: The only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. 

After the BNTVA participated in a cross-party Welsh government Senedd working group with Genetic Alliance UK, Rare Disease UK and SWAN UK in January, I can only conclude that the representatives advocated superbly with the Welsh Assembly Member involved on behalf of patients with both undiagnosed and diagnosed rare diseases. The BNTVA is delighted to be included as one of around 200 specialist charities and organisations represented by Genetic Alliance UK, and we are thrilled at their level of expertise and influence.

If you are searching for further information about genetic disease, please contact either the BNTVA, where we hold qualifications and experience in this area, or through Finding information about a rare or genetic condition | Genetic Alliance UK

More information is here concerning genetic testing Information | Genetic Alliance UK  

For information on research projects at the Centre for Health Effects of Radiological and Chemical Agents at Brunel University, London, led by Dr Rhona Anderson, and funded by our sister charity, the Nuclear Community Charity Fund, the link is here Research Projects – Centre for Health Effects of Radiological and Chemical Agents (chrc4veterans.uk)