It is only with friends like you that we can continue to expand our mission! We are a volunteer-driven, rare disease organization creating a nationwide community bound together by CCM.
If you would like to connect with others in your community affected by cavernous angioma and you would like to support the mission of Angioma Alliance, we are here to support you every step of the way. Email us to schedule a time to talk by phone to learn how you can be more involved.
To find Community Alliances, Events, and Centers of Excellence near you, please select a state below:
If there is no Community Alliance in your area, please read below to learn about ways to form one.
What is an Angioma Community Alliance?
An Angioma Community Alliance is an informal, structured group of volunteers in a specific geographical area that may be multi-state, statewide, or metropolitan, that works closely with Angioma Alliance to find and engage those affected by cavernous angioma, improve care through interactions with medical professionals, raise public awareness, and raise funds for a cure. An Angioma Community Alliance fosters stronger links between Angioma Alliance and families around the country.
Angioma Community Alliances can play a role in addressing some of the most common needs we hear:
“Are there other people with cavernous angioma near me that want to meet up?”
“Can anyone recommend a neurosurgeon in my area?”
“I wish there were a family conference or fundraising event near me.”
Each Angioma Community Alliance is dedicated to informing, supporting and empowering those affected by cavernous angioma and driving efforts toward better treatments and a cure.
- Raise revenue to drive research in the diagnosis, cause, management and care of cerebral cavernous angioma via national Angioma Alliance programs;
- Deliver support and education programs including finding patients, organizing informal adult or family meetups, disseminating patient education and resource information, and engaging local health care providers and the general public.
- Where appropriate, Angioma Alliance Community Alliances may organize conferences, serve as ambassadors to nearby Angioma Alliance Centers of Excellence and Clinical Centers, engage in legislative advocacy, or participate in other mutually agreed upon activities.
How We Work Together
We have outlined a general framework for the Community Alliance program so that we can support our mission together.
Angioma Alliance will:
- Provide staff support via Community Engagement and Fundraising Specialists and other staff, as deemed appropriate, to ensure the Community Alliance is successful in fundraising and program activities.
- Support efforts to train and recruit new committee members and volunteers. We can make a Zoom videoconference service available for first meetings.
- Annually review and communicate organization-wide progress toward strategic goals.
- Develop and make available high-quality, medically-sound and useful educational and public awareness materials.
- Identify and implement potential opportunities for collaborative revenue generation efforts including nationwide campaigns and corporate relationships.
- Establish and maintain a section of the Angioma Alliance website devoted to the Community Alliance.
- Distribute written policies, standards, procedures and guidelines for key aspects of Community Alliance operations.
- Maintain registered charity status in the Community Alliance’s locale.
Community Alliance Expectations:
- Serve as a resource for newly diagnosed patients and potential volunteers who want to engage with others who are affected in their area.
- Deliver support and education programs which can include maintaining a social media presence, organizing informal adult or family meetups, disseminating patient education and resource information, and engaging local health care providers and the general public.
- Activities are led by a minimum of 5 volunteers, which include a Chair, Treasurer, and other Officers as appropriate. Additional ad hoc and standing committees are encouraged, e.g., Fundraising, Education, or Outreach.
- Volunteers meet at least three times annually, with one required in-person meeting.
- Work toward a goal of raising at least $5,000 per year to drive research in the diagnosis, cause, management, and care of cerebral cavernous angioma via national Angioma Alliance programs.
- Where appropriate, organize conferences, serve as ambassadors to nearby Angioma Alliance Centers of Excellence and Clinical Centers, engage in legislative advocacy, or participate in other mutually agreed upon activities.
Are you ready to work together to create a Community Alliance in your area?
Below are goals we can work towards: