We are thrilled to recognize Rachel Paverman as the August Volunteer of the Month! Rachel is one of our go-to people when we need a hand with practically anything. From starring in our documentary “Eloquent” to supporting other community members, Rachel regularly goes out of her way to help. Most recently, Rachel has taken on…
The June 2023 newsletter, full of research and events information, is out. Read about new medicines coming into trials, our upcoming family conference, Empower 2023, and more. Read it here
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…
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…
Beth Israel Deaconess Medical Center 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…
