We are a new and growing, patient-focused organisation. Hereditary Brain Aneurysm Support (HBA Support) aims to support and inform people and families living with familial brain aneurysms or those who may be at risk.
We will also raise awareness of the condition as a rare condition to improve and save lives. Working with families and clinicians alike, we will help advocate for improved support, better care and more research into this hereditary condition.
HBA Support was set up in 2020 by Rebecca and Emma Middleton. After losing their mum and grandmother to brain aneurysms, Rebecca went through her own battle for diagnosis and subsequent treatment for a right MCA brain aneurysm.
Discovering the lack of balanced and accessible information available, Rebecca founded HBA Support to improve the situation for future patients and their families.
Guided by our community, HBA Support will be the trusted place for peer support, information and research on Hereditary Brain Aneurysms.
By amplifying and supporting the voice of the people affected, we will move forward our understanding of this life-changing rare disease together, working collaboratively with our partners for the good of families affected today and future generations.
We will build a community of people who share experience and insights of hereditary brain aneurysms, building networks, supporting families and together advancing our understanding of the condition as a genetic, life-changing disease.
We will collaborate and partner with patients, clinicians, researchers, health care professionals and wider stakeholders to increase awareness, improve patient care, and save lives.
We are a new organisation, growing our structures and building networks to deliver big for our community. We allow ourselves to make mistakes and learn and always look for the best solutions and most effective outcomes.
We invite everyone who shares our goals to join our community. We encourage partnerships, collaborations, embracing an entrepreneurial spirit to learn as we grow and capitalise on new opportunities. And we are proactive in building partnerships and relationships across the patient, clinical and research communities.
Everyone’s journey is different and living with a hereditary brain aneurysm or suspecting a familial link can be complex and overwhelming, impacting people’s lives in many ways. We look for the best outcomes, being both curious and supportive so that we can bring out the best in each other, the community and our partners to reach our goals.
We will challenge with a positive and enabling mindset, creating an environment that encourages learning, growth and support. We don’t shy away from the impact of this rare disease, and in doing so we provide reassurance through support that gives people essential tools and information. We are caring to need and are mindful of difference.
We are not ‘the experts’ – instead, we provide the bridge between patients, clinicians and researchers. Our community, Advisory Panel and Patient Forum guide what we do, providing knowledge and expertise that gives us credible, relevant and growing insights.
We learn from all experiences and insights, starting with the people impacted by the disease. As an organisation, we are at the start of our journey and recognise and embrace the opportunities to learn as we grow, test, and iterate.
We stay informed to further inform our community and learn from our peers and the clinical/research community. Where we see gaps in knowledge, we will always seek to fill them – as we did through the TLR.
We are a rare condition organisation focused on building a supportive community that will shape and inform what we do. And we will ensure everything we do will align with our overall vision and purpose. We will always put the needs of our community first.
HBA Support is registered in the UK and is committed to open and transparent practice. We’re putting in place a robust independent governance structure which includes a patient forum, an advisory panel and an executive committee. If you’re interested in hearing more or would like to join our forum or advisory panel, please get in touch with HBA Support.
At the end of our first full year, we will publish our first impact report outlining our work and how we have delivered against our strategic objectives, mission, and vision. As we’re a new organisation, we’d love to hear your views and thoughts on what the future could hold.
