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Survivor/Caregiver Resources

Updated: Jun 14

Aortic Disease Support Groups



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 Hope Caregiver Private Forum

  • Aortic Hope Private Forum

  • Ascending Aortic Aneurysm Awareness The sometimes silent killer!!

  • Diane Bishop Aortic Health of Alabama

  • 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)

AAAneurysm Outreach

Aortic Bridge

Aortic Hope

Aortic Warriors

Genetic Aortic Disorders Association Canada

Marfan Foundation

National Organization for Aortic Awareness

The John Ritter Foundation for Aortic Health

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.

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