Angioma Alliance 7th Annual Pathiobiology Workshop
Our American sister organisation the Angioma Alliance recently held their 7th Annual Pathiobiology Workshop at Chantilly in France. Along with our American partners and the support of Genetic Alliance UK, CA UK part-sponsored this event.
Ongoing research into cavernoma is an area that CA UK has for a long
time wanted to undertake. When an opportunity arose to work with the
generous support of Genetic Alliance UK to sponsor a set of clinical guidelines for CCM, CA UK seized the opportunity. Funding was invested in research undertaken by a team at the University of Edinburgh led by one of CA UK's medical advisers, Dr. Rustam Al-Shahi Salman, with additional input by Mr. Neil Kitchen and Dr. Jonathan Berg.
These CCM guidelines were presented to clinicians by Dr. Salman Rustam Al-Shahi who gave a paper at the workshop which can be downloaded here titled Theraputic guidelines for the management of CCM in adults: quality of the evidence (Adobe/PDF, 553KB). Dr. Salman is to integrate further material from Dr. Berg, the CCM clinical geneticist. The full study will be available on the website in February.
CA UK's hope is that this important work will benefit the clinical management of current members and certainly assist future generations in the community who are diagnosed with cavernoma.
The workshop was also an opportunity to make contact with other support organisations for people with cavernomas including CCM Italia, a new one to us, whose logo we display on the right of this page and we hope to meet up with again.