Angioma Alliance Changes Name to Alliance to Cure Cavernous Malformation in Celebration of its 20th Anniversary

May 16 18:07 2022
Name change reflects momentum towards finding a cure for patients suffering from cavernous malformation, a blood vessel disorder causing strokes and seizures that affects at least 360,000 people in the U.S. alone

CHARLOTTESVILLE, VIRGINIA – May 16, 2022 – Angioma Alliance, the leading international patient research organization with a mission to inform, support, and mobilize those affected by cavernous malformations and drive research for better treatments and the cure, today announced in celebration of its 20th anniversary that it has changed its name to Alliance to Cure Cavernous Malformation and its web site address to AllianceToCure.org.

“On our 20th Anniversary, I’m proud of everything our team and partners have accomplished as we continue to make progress on our mission to find a cure for cavernous malformation by bringing together the world’s largest cavernous malformation patient community and the most cutting-edge research.  In March, patient enrollment began in Recursion’s REC-994 Phase 2 Clinical Trial, the first drug trial testing a potentially game-changing medicine developed specifically for cavernous malformation.  Our new partnership with the Chan Zuckerberg Rare as One Initiative builds upon our existing health equity outreach efforts, which in the last year have helped lead to a 200 percent increase of Black patients in our Patient Registry and, over the past decade, have identified and directed thousands of patients of Hispanic origin in New Mexico to quality care.  And we continue to provide information and support to our highly engaged patient community, who are ready for treatments other than brain or spine surgery,” said Connie Lee, Alliance to Cure Cavernous Malformation CEO.  “Renaming the organization reflects our belief that we’re closer than ever to a cure.”

Cavernous malformation, also known as cavernoma, cavernous angioma, or cerebral cavernous malformation (CCM), is a blood vessel disorder that causes mulberry-shaped lesions to form in the brain and/or spinal cord.  The malformations have also been known as cavernous angioma and cavernoma. The lesions leak blood into surrounding brain or spinal cord tissue and can cause seizures, strokes, and in some instances, death.  While anyone can develop a cavernous malformation lesion, 20 percent of patients have a hereditary form of the condition, known as CCM1, CCM2, or CCM3, that does not skip generations.  An estimated one in 500 people in the United States has at least one cavernous malformation, and 25 percent of those people will experience symptoms.

The organization’s new name reinforces the language most used by scientists and clinicians, and “cavernous malformation” will become the official diagnostic term later this year in the International Classification of Diseases Version 11 (ICD-11).

Alliance to Cure Cavernous Malformation began 20 years ago when CEO Connie Lee established a patient support group after her young daughter was diagnosed.  The organization now represents tens of thousands of patients and caregivers and works in partnership with scientific and medical experts.  It has recognized 11 Clinical Centers and Centers of Excellence in 10 states.

About Alliance to Cure Cavernous Malformation

Alliance to Cure Cavernous Malformation, formerly known as Angioma Alliance, is a 501(c)3 non-profit with a mission to inform, support, and mobilize those affected by cavernous malformations and drive research for better treatments and the cure. The organization is a 2021-2023 Chan Zuckerberg Rare As One grant awardee and serves as a model for other rare disease organizations. More information can be found at AllianceToCure.org.

Media Contact
Company Name: Alliance to Cure Cavernous Malformation
Contact Person: Dinah Winchester
Email: Send Email
City: Charlottesville
State: VA
Country: United States
Website: www.AllianceToCure.org

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