Ashby-based Hereditary Brain Aneurysm Support, the UK's first patient-centred organisation providing support and resources for people and families affected by hereditary brain aneurysms, has announced its new status as a registered charity.
With this new status, HBA Support is set to launch several impactful projects aimed at improving care and support for patients with familial brain aneurysms.
This autumn, the organisation is working on the 'HBA Patient Guide'—a resource created in collaboration with NHS specialists and patients. The guide will provide accessible information, tips, and advice for those living with the condition and will be accompanied by a comprehensive awareness campaign in 2025.
Rebecca Middleton, Founder and Chair of HBA Support, said: "This is wonderful news and a significant milestone for our organisation, since our creation in 2021.
"Achieving charity status is the culmination of a lot of hard work, and we are incredibly grateful to our trustees and everyone who has supported us on this journey.
"We are delighted that we can now operate as a registered charity, which will unlock many more funding opportunities and ensure continued good governance and best practices in our operations."
Additionally, HBA Support has secured research partnerships to delve deeper into the patient pathway for those with suspected familial brain aneurysm syndrome.
Working with Costello Medical, the organisation aims to identify gaps and inconsistencies in current clinical practices across the UK and advocate for improvements.
The charity is also supporting two Genetic Counselling MSc Students from Cardiff University with research projects looking at the patient experience of screening and diagnosis.
Their insights will be valuable to the community, identifying further gaps in care and support.
October also saw HBA Support's first fundraising event as 30 people, including three Trustees, took on the challenge of running the Leicester half marathon and the Leicester 10K.
Their efforts achieved over double their target total of £2,000, with the fund now at over £4000.
All funds will go back into creating more support and information for people and families impacted by hereditary brain aneurysms.
Rebecca added: "Becoming a charity allows us to continue our mission with renewed focus and capability.
"We are committed to raising awareness of this devastating condition and improving care for those affected. Our transition to charity status is a crucial step forward in achieving our long-term goals.
"But we desperately need patients to come forward, take part in the research and get their voices heard. If you, or your partner, has been affected by a brain aneurysm, and there is a risk that it could run through the family, please come forward - we need to hear from you. We won't ask for more than an hour for a friendly chat and all details and answers will be anonymously used and completely confidential."
