Current News & Updates

Webinar: Tools to Talk to your Kids about Cavernous Malformation

Join us September 28th at 7:00 pm Eastern, 4:00 pm Pacific time for our monthly webinar. This month, we will discuss Tools to Talk to your Kids about Cavernous Malformation and read the new book Bizcochito. Presenters are Nicole Clayton, Licensed Professional Counselor and Wife and Mother of CCM patients and Darla Clayton, Clinical Psychologist,…

Alliance to Cure Wins Prestigious Rare Disease Organization Award

On this Rare Disease Day, we are honored to announce the National Organization for Rare Disorders (NORD) has awarded the Alliance to Cure Cavernous Malformation this year’s prestigious Abbey S. Meyers Leadership Award. There are 2000 rare disease organizations, 330+ of which qualify to be members of NORD. NORD recognizes one organization each year for…

Alliance to Cure Cavernous Malformation Recognizes Thomas Jefferson University Hospitals as a CCM Clinical Center

Thomas Jefferson University Hospitals in Philadelphia, Pennsylvania has been recognized as a designated Clinical Center by the Alliance to Cure Cavernous Malformation for the treatment of cavernous malformations. A cavernous malformation, also known as a cerebral cavernous angioma or cavernoma, is a mulberry-shaped collection of abnormal blood vessels with thin, leaky walls, most often found…

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