It’s hard to believe that nearly two months ago, we were launching HBA Support to the public – setting out our mission to provide much-needed information and guidance for people impacted by hereditary brain aneurysms.

In some ways, it feels like no time at all since we pressed go on our website and invited people to get in touch for the first time - but it also feels as if we’ve been around forever, particularly given the huge amount we’ve been able to do in such a short time. 

The website and literature review look fabulous and I have no doubt they will be an excellent source of information for those concerned.”

Rare Chromo.

Perhaps the most significant piece of work we’ve undertaken so far is to launch our Targeted Literature Review (TLR), which compiles easy-to-understand information on the rare disease in one, accessible, resource. Through conducting the TLR, we’ve also been able to uncover gaps in knowledge – providing important information to the clinical community and demonstrating the need for new research into the rare disease. 

We’re also enormously proud of the feedback we’ve had from those living with brain aneurysms, their families and clinicians. Genomics England told us, for example, that the team “finds this sort of resource useful to walk through with families in clinic - but rarely finds anything so comprehensive!” – which is fabulous news. 

A big thank you to everyone who has helped us on our journey! 

In the last month, we’ve been fortunate enough to meet with a number of fantastic organisations – and we’d like to take this opportunity to thank everyone who has taken the time to connect with us.  You’re all playing a huge role in helping to improve patient information and to increase research and understanding into brain aneurysms that run in families. Thank you to: BA Found, Neurological Alliance, Genetic Alliance, Rare Minds, Gene People, Beacon, British Association of Neuroscience Nurses, Eurordis – and to many more too! 

So it’s been an incredible first eight weeks - but of course, our work has only just begun, and there are great things to come from the team! 
We’re kicking off our next phase by recruiting people to join a patient panel as part of our new Governance team. This is an amazing opportunity to shape our future – and we’d love for anyone who thinks they might be able to help to get in touch.  
We’re also looking for 4-6, genomic, research and third-sector experts to join our advisory panel – helping fundamentally shape the work we do and our focus. If this sounds like you – please contact us
And of course, on top of all this, we’ll be working hard to connect with as many people as possible in the field, build partnerships and seek feedback on what the community most needs from us. Please do visit our blog to stay up to date with what’s happening at HBA Support, and if you’d like to donate to the cause, you can do so here
Thank you to everyone who has made our first month so rewarding and enjoyable!