Community Alliance
There is not yet an Iowa Community Alliance, but we would love to know if you are interested in joining others to form one!
Visit our Angioma Community Alliance page to learn more about how you can meet others in your area, provide mutual support, organize events, and raise awareness. We need 5 people to get a Community Alliance off the ground. Likely, we already know a few interested members near you!
Please contact Lindsay Ramirez at lindsay@alliancetocure.org to let her know you are interested in participating or if you are interested in holding an event in your community.
In the meantime, please request to join our Great Lakes/Central Region Facebook group for peer support and more information about local resources.
Center of Excellence (COE):
Alliance to Cure Cavernous Malformation has recognized the Mayo Clinic Hospital – St. Mary’s Campus, Rochester, MN as a Center of Excellence.
Medical Director: Kelly Flemming, MD, Department of Neurology
Phone: (507) 538-1036
For more information about the Mayo Clinic and our other Centers of Excellence, please visit our information page.
upcoming events online and around the country
Jun 1 @ 8:00 pm – 9:00 pm
8:00 pm
Join us the first Thursday of every month for an information meeting for new patients. CCM 101 is a space for newly diagnosed members and their families to ask questions, get support and connect with...
Zoom Jun 1 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Jun 3 @ 9:00 am – 10:00 am
9:00 am
New Mexico Community monthly Zoom. Join us on the first Saturday of every month, follow the link here: https://us06web.zoom.us/j/88044684492?pwd=N3FmQllLQlllaTBhOEE4bkxkc3RSQT09
Jun 5 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support! Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Jun 6 @ 7:00 pm – 8:00 pm
7:00 pm
Florida Community Monthly Zoom. Join us on the first Tuesday of every month. Follow the link: https://us06web.zoom.us/j/88556754593?pwd=STROalZOYk9VVndIbURzdUh1RitJQT09
Jun 7 @ 7:00 pm – 8:00 pm
7:00 pm
Tri-State Community monthly Zoom. Join us every first Monday of the month. Follow the link: https://us06web.zoom.us/j/87910260457?pwd=ZmtwUnp1R3o0N1NsMFpkMy9YTXpZZz09
Jun 8 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Jun 10 @ 10:00 am – 11:00 am
10:00 am
NorCal Community Monthly Zoom. Please join us on the second Saturday here at this link: https://us06web.zoom.us/meeting/register/tZUtdOmupzkjHdNCtoN8WinwOrImq5p4MhN_
Jun 12 @ 3:00 pm – 4:00 pm
3:00 pm
Arkansas/Missouri Community monthly Zoom meeting. Join us on the second Monday of every month at this link: https://us06web.zoom.us/j/89761343205?pwd=Z0tNOCtublI5cmIwRXlkYlpFdFA5dz09
Jun 12 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support! Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Jun 12 @ 7:00 pm – 8:00 pm
7:00 pm
Texas Community, join us every second Monday of the month at this link: https://us06web.zoom.us/j/87125872075?pwd=aGJidkxQK01yK1lVaVJtYVVLOW1XUT09
Jun 13 @ 7:00 pm – 8:00 pm
7:00 pm
Michigan Community Monthly Zoom. Join us the second Tuesday of every month here at this link: https://us06web.zoom.us/j/87645427157?pwd=MldUOU9yVUd4c29RaXZ6dTZhMUpCdz09
Jun 15 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Jun 15 @ 8:00 pm – 9:00 pm
8:00 pm
Join us on the 3rd Thursday of the month at 8pm Eastern, 5pm Pacific for a special group for parents of children affected by CCMs. You will join our weekly support group meeting and then...
Jun 19 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support! Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Jun 19 @ 7:00 pm – 8:00 pm
7:00 pm
Colorado Community monthly Zoom meeting. Join us every third Monday of the month here: https://us06web.zoom.us/j/87585957847?pwd=d3JsZjdUam5XYU83WXJQYTUwVU9aZz09
Jun 20 @ 7:00 pm – 8:00 pm
7:00 pm
New England Community monthly Zoom. Join us on the third Tuesday of every month at this link: https://us06web.zoom.us/j/86328441747?pwd=THE3SkQxMXpROGpwTExOTnNrS0Jodz09
Jun 20 @ 3:00 pm – 4:00 pm
3:00 pm
Spinal Community monthly Zoom. Join us on the third Tuesday of the month here at this link: https://us06web.zoom.us/j/88055060667?pwd=dlIxaEQxNXFjeDFhYlFFblRCNTIwQT09
Jun 22 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Jun 26 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support! Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Jun 26 @ 7:00 pm – 8:00 pm
7:00 pm
Northwest Community monthly Zoom. Join us every fourth Monday of the month. Follow the link: https://us06web.zoom.us/j/82937886165?pwd=UUszVEpmNERTQjZMZVhrVzlJUWoyQT09
Jun 29 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Jul 1 @ 9:00 am – 10:00 am
9:00 am
New Mexico Community monthly Zoom. Join us on the first Saturday of every month, follow the link here: https://us06web.zoom.us/j/88044684492?pwd=N3FmQllLQlllaTBhOEE4bkxkc3RSQT09
Jul 3 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support! Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Jul 4 @ 7:00 pm – 8:00 pm
7:00 pm
Florida Community Monthly Zoom. Join us on the first Tuesday of every month. Follow the link: https://us06web.zoom.us/j/88556754593?pwd=STROalZOYk9VVndIbURzdUh1RitJQT09
Jul 5 @ 7:00 pm – 8:00 pm
7:00 pm
Tri-State Community monthly Zoom. Join us every first Monday of the month. Follow the link: https://us06web.zoom.us/j/87910260457?pwd=ZmtwUnp1R3o0N1NsMFpkMy9YTXpZZz09
Jul 6 @ 8:00 pm – 9:00 pm
8:00 pm
Join us the first Thursday of every month for an information meeting for new patients. CCM 101 is a space for newly diagnosed members and their families to ask questions, get support and connect with...
Zoom Jul 6 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Jul 8 @ 10:00 am – 11:00 am
10:00 am
NorCal Community Monthly Zoom. Please join us on the second Saturday here at this link: https://us06web.zoom.us/meeting/register/tZUtdOmupzkjHdNCtoN8WinwOrImq5p4MhN_
Jul 10 @ 3:00 pm – 4:00 pm
3:00 pm
Arkansas/Missouri Community monthly Zoom meeting. Join us on the second Monday of every month at this link: https://us06web.zoom.us/j/89761343205?pwd=Z0tNOCtublI5cmIwRXlkYlpFdFA5dz09
