Angioma Alliance Newsletter
The latest edition of the Angioma Alliance newsletter is now
online for you to read.
Cavernoma Alliance UK began life as Angioma Alliance UK - an independent outgrowth of Angioma Alliance - focused on the needs of affected individuals in the UK. As the years have gone by, Cavernoma Alliance UK has grown into a successful, thriving charity that maintains close ties to its sister organisation across the pond. While some of the Angioma Alliance USA newsletter is targeted at a US audience, it provides research updates and other information that applies to affected individuals around the world
Of especial interest to UK readers in this edition will be the section on The International Cavernous Angioma Patient Registry.
This was developed as a communication tool for patients with Cavernoma (Cavernous Angioma, CCM) and researchers. It is also a free standing tool to gain more information about how Cavernoma affects people. Any collected data made public will be available in an analysed format and will have all identifying information removed.
By completing a registry profile, you will be helping to provide a snapshot of the larger community of people affected with Cavernoma. Registered participants offer a valuable resource to the research community and are able to view the analysed data. Additionally, the information that you provide will allow the Registry Coordinator to contact you about studies for which you are eligible to participate. Your personal information will not be shared without your permission, and you are under no obligation to participate in any studies. The goal of the Patient Registry is to help researchers make advances toward understanding the biology of Cavernoma and to facilitate the development of a non-invasive treatment - your participation is an essential component of Cavernoma research.
Further details will be available from Dr. Amy Akers, Chief Scientific Officer, Angioma Alliance, who will be speaking at the International Cavernoma Alliance UK Forum this summer. Details of the Forum, to be held at the Grange Holborn Hotel, and is free to members, are available here.