Updated: May 1
Aortic Disease Support Groups
SHARED FROM THE COMMUNITY…..FOR THE COMMUNITY
CONNECTING HEARTS…ONE BEAT AT A TIME
Please note, there are groups on Facebook and the Web dedicated to Marfan Syndrome, Ehlers-Danlos Syndrome and Loeys-Dietz Syndrome
While Aortic Hope offers:
• Opportunities you to participate in live interviews with physicians, surgeons, therapists, lawyers etc
• Survivor videos for inspiration and education
• FREE Hope Mail care packages every month
• A partnership with John Ritter Research Program for Aortic Disease in providing links to research programs
• FREE contests with awesome prizes
• Live virtual support groups
• Sister pages providing closed support to survivors or caregivers (places where you can share your concerns, ask questions, share your accomplishments etc)
We feel strongly that there are MANY wonderful Facebook pages where you can receive support. There are also other 501c3 charities like us that work tirelessly to provide education, research, awareness, support and hope, through the generosity of donations.
There is room for everyone to help!
Wherever you go for your support, we truly appreciate that you are here...that you have "liked" us, "follow" us and "share" our information.
FACEBOOK SUPPORT PAGES: (these are only some of what exist)
Abdominal Aortic Aneurysm Awareness
Aortic Aneurysms, Heart and Cardiovascular Diseases In African Americans
Aortic Dissection Awareness Day
Aortic Dissection Support Group
Aortic Dissection Surgery Support & Education Group
Aortic Dissection Survivors and Family, Friends.
Aortic Dissection Survivors-Pregnancy Related
Aortic Dissection US
Aortic Dissection Support Group for Women
Aortic Health Unlimited
Aortic Hope Caregiver Private Forum
Aortic Hope Grief Only Private Forum
Aortic Hope Private Forum
Ascending Aortic Aneurysm Awareness The sometimes silent killer!!
Dissection Life & Cardiovascular Health
Living Life With An Abdominal Aneurysm
Survivors of Aortic Dissection
The 2% Club - Aortic Aneurysm Survivors
NON PROFIT ORGANIZATIONS: (not necessarily a complete list)
Genetic Aortic Disorders Association Canada
Loeys-Dietz Syndrome Foundation Canada
National Organization for Aortic Awareness
The John Ritter Foundation for Aortic Health
Think Aorta US
Rock From The Heart
Each of these groups have slightly different goals. Some provide an open forum for support and discussion, others are tailored towards a specific gender or race. Some provide information pertaining to fundraising events and some put together events for survivors and caretakers to meet and celebrate. A couple of these groups have very beneficial information pertaining to genetic testing and the latest in medical research. There is even a group dedicated to posting anything artistic or any hobbies you are doing since dissecting.