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Survivor/Caregiver Resources

Writer's picture: ~HQ~HQ

Updated: Sep 18, 2024

Aortic Disease Support Groups

SHARED FROM THE COMMUNITY…..FOR THE COMMUNITY

CONNECTING HEARTS…ONE BEAT AT A TIME

*Aortic Hope cannot vouch for the accuracy of information posted within the groups mentioned below.


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 for you to participate in live interviews with physicians, surgeons, therapists, lawyers etc on our AHTV YouTube channel

  • FREE DOWNLOAD of Aortic Dissection: The Patient Guide to help you navigate your recovery

  • Survivor videos for inspiration and education

  • FREE Hope Mail care packages every month

  • A partnership with Think Aorta US and Rock from the Heart to help you Listen, Learn, Lean and Love

  • 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 Aneurysm and Aortic Valve Disease Support and Education Connection

  • Aortic Aneurysms, Heart and Cardiovascular Diseases In African Americans

  • Aortic Aneurysm Network

  • Aortic Athletes

  • 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 Canadian Private Forum

  • Aortic Hope Caregiver Private Forum

  • Aortic Hope Grief Only Private Forum

  • Aortic Hope Private Forum

  • Ascending Aortic Aneurysm Support Group

  • Dissection Life & Cardiovascular Health

  • Living Life With An Abdominal Aneurysm

  • Survivors of Aortic Dissection

  • The 2% Club - Aortic Aneurysm Survivors

  • Thoracic Aorta Aneurysm Group

NON PROFIT ORGANIZATIONS: (not necessarily a complete list)

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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Our Sponsors
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Rock from the Heart's mission is to proactively educate people about aortic and heart valve disease, bridge the gap between impacted families and the support they need, connect those diagnosed with vital resources, and inspire all through the healing power of music.  

Doherty, Cella, Keane LLP is a national law firm solely focused on Social Security disability benefits. With over 40 years of expertise, their skilled attorneys guide clients through every stage of the process, from initial applications to appeals. The firm is highly experienced in representing individuals with aortic dissections and related conditions, ensuring specialized, compassionate advocacy. Operating on a contingency basis, they provide peace of mind with no fees unless benefits are awarded. Trust DCK Law for reliable and dedicated representation in this critical area.

Heart Valve Voice US, a patient advocacy, nonprofit organization, provides patients with a united voice to improve health for people living with heart valve disease by advocating for early detection, meaningful support, and timely access to appropriate treatment for all people affected by heart valve disease. Heart Valve Voice works with people living with heart valve disease, clinicians and other experts, and other patient service and advocacy organizations to identify barriers to improving health for people living with valve disease and advocates for change to enhance health.

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Nectero Medical is a clinical-stage biotech company pioneering novel therapies with a potential to treat aneurysmal disease and improve patients’ lives.

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Aortic Hope P.O. Box 17 Abingdon, MD 21009

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