Page 61 - Read Online

Lee. Vessel Plus 2022;6:7 Vessel Plus
DOI: 10.20517/2574-1209.2021.31

Perspective Open Access

Unique contribution of one patient advocacy

organization in advancing cerebral cavernous
malformation awareness and research

Cornelia Lee

Angioma Alliance, Charlottesville, Virginia 22901, USA.
Correspondence to: Dr. Cornelia Lee, Angioma Alliance, 977 Seminole Trail, #367, Charlottesville, Virginia 22901, USA. E-mail:
clee@angiomaalliance.org
How to cite this article: Lee C. Unique contribution of one patient advocacy organization in advancing cerebral cavernous
malformation awareness and research. Vessel Plus 2022;6:7. https://dx.doi.org/10.20517/2574-1209.2021.31
Received: 19 Feb 2021 First Decision: 17 Mar 2021 Revised: 25 Mar 2021 Accepted: 8 Apr 2021 Published: 17 Feb 2022

Academic Editor: Jun Zhang Copy Editor: Yue-Yue Zhang Production Editor: Yue-Yue Zhang

Abstract
Advocacy organizations have long played a role in advancing care and research for patients affected by rare
disease. Angioma Alliance has served traditional functions of organizing scientific meetings and creating shared
resources like a tissue bank and a patient registry. Uniquely, the organization has employed creative patient
engagement methods like subsidized genetic testing as well as targeting special populations to expand research
participation and understanding of the illness. Special populations include those with CCM3 mutations, the CCM1
Common Hispanic Mutation, and Black patients.

Keywords: Cavernous, angioma, malformation, cavernoma, advocacy, cerebrovascular disorders, patient cohorts,
patient community, Hispanic, founder mutation

INTRODUCTION
Angioma Alliance was founded in 2002 to serve the cerebral cavernous malformation (CCM) patient and
research community. Over the course of the past 18 years, the organization has grown from a mother’s
kitchen table to an international partner in the work toward better treatments. The organization does not
fund research directly; rather the focus is on creating shared resources for researchers and for patients with
a special focus on expanding, engaging, and characterizing the patient base.

© The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0
International License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, sharing,
adaptation, distribution and reproduction in any medium or format, for any purpose, even commercially, as
long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and
indicate if changes were made.

www.vpjournal.net