Introducing the organisation

Vision

Guided by our community, HBA Support is the trusted place for peer support, information and research on Hereditary Brain Aneurysms.

By amplifying and supporting the voice of the people affected, we are moving 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.

Mission

We have built a community of people sharing experiences and insights into hereditary brain aneurysms, built networks, supported families, and advanced our understanding of the condition as a genetic, life-changing disease.

We are collaborating and partnering with patients, clinicians, researchers, healthcare professionals, and stakeholders to increase awareness, improve patient care, and save lives.

Values

Pragmatic

We are a growing organisation, building our structures and networks to deliver big things for our community. We are listening and learning, taking direction from what our community wants and needs.

Friendly, approachable & collaborative

We invite everyone who shares our goals to join our community. We encourage partnerships and 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.

Sensitive & balanced

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 curious and supportive to 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 care about needs and are mindful of differences.

Open to learning

We are a vital 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.

Focused

We are a rare condition organisation focused on building a supportive community that will shape and inform what we do. And we will ensure that everything we do aligns with our overall vision and purpose. We will always put the needs of our community first.

Governance & structure

HBA Support is registered in the UK and is committed to open and transparent practice. We’re implementing a robust independent governance structure, which includes a patient forum, an advisory panel and an executive committee. If you want to hear more or want to join our forum or advisory panel, don't hesitate to 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. We would love to hear your views and thoughts on what the future could hold.

Meet the Founder of HBA Support

"As a rare condition patient, I have more almost 10 years as a patient advocate, collaborator and communicator. After undergoing NHS genetic testing in 2015 without success, I joined the ground-breaking Genomics England’s 100,000 Genomes project. Soon after that, I joined its Participant Panel as a founding member and now sit as Vice Chair of the Participant Panel.

The panel is tasked with ensuring the interests of participants are always at the forefront of the organisation's work, representing rare disease and cancer patients' interests and impacting clinical design and policy.

I have sat on the oversight committees for two major public dialogue programmes examining public attitudes to genetics in newborn screening and society’s attitudes to genetic testing in the NHS today.

I’m currently sitting on the steering group of the Newborn Genomes Programme, a co-designed an NHS-embedded research study to explore the benefits, challenges, and practicalities of sequencing and analysing the genomes of newborns. I’m also chairing a working group for the study which is looking at recruitment, branding, communication and dialogue with expectant parents and their families.

As a PR and communications professional and ex-journalist with over 20 years’ experience, I’m also passionately committed to open, understandable and transparent patient communications and delighted to use my experience within this setting."

Hear Rebecca talk more about her story, the development of HBA Support and her role as part of a patient panel with Genomics England on its G Word Podcast: The G Word podcast

Rebecca also appeared on BBC Radio 4’s Woman’s Hour, sharing her personal story and her involvement with the NHS Newborn Genomes Programme: Listen to Rebecca on Woman's Hour

“Having lost family to aneurysms, including my mother and grandmother to brain aneurysms, and having undergone treatment for a brain aneurysm myself, I founded HBA Support in 2020, along with my sister, Emma.

Right from the start of my journey, I realised there was a real lack of helpful and reliable information – and I knew this was an issue that others must be facing too.

I set up HBA to support and inform people living with familial brain aneurysms and raise awareness of the condition as a rare disease, representing the lived experience and improving and saving lives."

Rebecca Middleton - Founder and CEO