Hereditary Brain Aneurysm Support

Our aim is to positively support and inform patients and families living with hereditary (familial) brain aneurysm syndrome and raise awareness of the condition as a rare disease, improving and saving lives.

We are currently building this website to become a source of support and information. Please visit again soon.

Find out more information on hereditary brain aneurysms and screening while we are busy behind the scenes creating this support resource.

To get in touch please email support@hbasupport.org

We’re hiring! Can you help HBA Support to grow?

See our job description below and get in touch! Email rebecca@hbasupport.org

Who is Hereditary Brain Aneurysm Support?

Improving and saving lives.

Aneurysms are a significant silent killer in the UK and a portion of those lives could be saved or made better with earlier diagnosis and a better understanding of genetics. Some aneurysms are down to simple bad luck, but a portion do have a hereditary pattern and this needs to be understood more by the public and the medical community.

Hereditary Brain Aneurysm Support will support patients and families by providing reliable information based on scientific guidance, NHS data and signposting further charities and community information. We will also provide a platform for patients to share stories and promote peer-to-peer support. We will advocate and work for familial brain aneurysm syndrome and disease to be recognised as a life-changing genetic condition that requires clinical support and investigation by raising awareness in the clinical and wider communities we serve.

We have big ambitions and, as a registered CIC, we are just at the start of our journey. Costello Medical are experts in healthcare analysis and interpretation, clinical and health communication and health economic data. They are working closely with HBA Support to build a bank of knowledge of data and research on hereditary brain aneurysms to build on solid foundations. With this health data, we are in a stronger position to lobby for our goals and enter a dialogue with the clinical and research community.

We need to reach out and engage with both the patient and medical/science/policy communities. We’re taking a first step and looking for a talented manager to join us on this journey of building a force for patient good, raising the profile of Hereditary Brain Aneurysms as a rare genetic disease in the UK with clinicians, researchers and with patients, and providing a voice for a yet silent community.

Work with us!

Communications and Engagement Manager

Role:

Working alongside the Founder, Rebecca Middleton, bring the vision and mission of the organisation alive through tactical delivery, community and healthcare/research engagement and strategic planning. Help set strategic and tactical priorities for the coming months and keep on top of project management and tasks.

As a growing and developing ‘non-profit’, this is a great opportunity to provide key support to help guide HBA Support’s journey, led by the founder.

This role will evolve and develop as the non-profit grows and a pragmatic attitude is essential as we move long the growth journey to a successful patient focused support organistion. 

Key Tasks:

  • Help us build and develop our governance structures, policies and recruit our first board, building on the contacts of HBA Support’s founder and reaching out to relevant communities
  • Support the development of the website (copy & design underway)
  • Support development of key messages
  • Support the development the Facebook and Twitter channels and produce content
  • Build patient community online through social channels
  • Work with the founder to build strategy and five-year plan
  • Develop engagement strategy and plan and support the establishment of key relationships with leading stakeholders, as identified through existing stakeholder analysis
  • Work with partner agencies and affiliated charities to build network support infrastructure for patients/families
  • Scope to develop, influence and seize growth opportunities, dependent on skill set and experience

Experience:

  • 5 -10 years’ experience in the healthcare community/non-profit sector developing and building communities, developing reputations and getting a seat at the table
  • Strong communicator and ability to build relationships with key stakeholders, across all levels
  • Able to take direction while being a self-starter and using initiative to develop programmes of work, build momentum and seize opportunities
  • Experience of building diverse communities and rolling our voluntary support services, online
  • Strong social media skills
  • Experience of governance structures and charitable/non-profit based policies and strategies and managing boards
  • Some experience in the fundraising landscape and opportunities available; desired but not essential

Hours:

  • One day a week (7-8 hours per day). £800 – £1,000 per month. Hours during the week to be flexible but must be able to meet founder on a Monday, virtually, (approx. 2 hours) to discuss priorities. Employed as a freelance practitioner, not PAYE.
  • Starting on a 6-month contract with ambition for a permanent role, dependent on funding.
  • References required.

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