Aorta Advocates
Peer Support and Resource Navigation
Are you facing a new diagnosis or simply want to connect with someone who has walked a similar path? Aorta Advocates are trained volunteers with personal experience in aortic aneurysm and dissection. They’re here to guide you on your journey, offering resources, information, and a unique connection based on shared experiences.
Whether you’re an aortic patient, a caregiver, at risk due to a genetic condition, or have lost a loved one to aortic dissection, The John Ritter Foundation can connect you with a peer who understands. You are not alone! Our Aorta Advocates, range from ages 18 to 65+ and bring diverse life and aortic experiences. Connect over video, phone, or email when it works for your schedule.
What should you look for in a support group or online community?
- Choose a group that is facilitated or moderated by healthcare professionals or trained moderators (e.g. a social worker, nurse, or mental health professional). Their guidance can help ensure that discussions are constructive and supportive, while ensuring that everyone is given a chance to participate.
- Confirm that the support group prioritizes the privacy and confidentiality of participants. This is especially important when discussing personal health information and experiences.
- Consider seeking individual therapy or counseling. Support groups are not for everyone and are not a substitute for mental health care by a qualified professional. A mental health professional can offer personalized support and guidance. They may also be able to connect you with resources or other individuals facing similar challenge.
Support groups and resources
Please note: The John Ritter Foundation does not monitor the content of these resources and cannot vouch for the accuracy of all information posted.
University of Pittsburgh Medical Center – Aortic Support Group
Led by the experts at the UPMC Center for Thoracic Aortic Disease (CTAD), the Aortic Support Group is here for you. Connect and share experiences with others while learning about your or your loved one’s aortic disease. This free support group is open to all patients and concerned family members. If you’d like to join us or learn more about the CTAD Support Group, contact our support group coordinator at AorticSupport@upmc.edu.
As the nation’s premier peer-support program for patients with heart disease and their families, The Mended Hearts, Inc. has served millions by providing support and education, bringing awareness to issues facing those living with heart disease, and advocating to improve the quality of life across the lifespan. Mended Hearts, Inc. has local chapters and groups around the country. Find a branch or group near you here.
Aortic Hope is a community of Aortic Disease patients, survivors, and caregivers. Aortic Hope also offers Live Q&A sessions and survivor videos and stories.
Disease specific organizations
The Marfan Foundation is a nonprofit organization that saves and improves lives while creating a community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. They offer a wealth of information for you and your loved ones about Marfan syndrome and related disorders and helpful resources for children and teens. Support for Individuals and Families can be found here.
Loeys-Dietz Syndrome Foundation
The Loeys-Dietz Foundation is dedicated to encouraging education about Loeys-Dietz syndrome and related connective tissue disorders to medical professionals and communities to aid in the identification, diagnosis, and treatment of Loeys-Dietz syndrome. In addition, they provide a support network for individuals, parents, and families affected by Loeys-Dietz syndrome.
The VEDS Movement mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS).
The VEDS Collaborative is a group of patients, family members, researchers, and clinicians dedicated to developing a patient-centered plan for scientific research to improve the management of vascular Ehlers-Danlos Syndrome and increase the quality of life for all those impacted by the disease.
The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS) hypermobility spectrum disorders (HSD), and related conditions. Great community resources including support groups, can be found here. The EDS Society also operates a free phone and email helpline. Patients with confirmed VEDS (Vascular Ehlers-Danlos) may be better served by VEDS specific groups.
Turner Syndrome Society of the United States
TSSUS serves the important and diverse needs of the Turner syndrome community. TSSUS is the largest organization supporting those with TS in the world and we coordinate efforts with national and international TS organizations, physicians, and researchers.
Country and Region Specific Organizations
GADA – Genetic Aortic Disorders Association Canada
Previously known as the Canadian Marfan Association, GADA remains dedicated to saving lives and enabling a promising future for individuals living with Marfan syndrome and other genetic aortic disorders through education, awareness, support and research.
The the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) gathers highly specialized expert Healthcare Providers and their multidisciplinary teams, together with patients and the scientific community, to tackle the challenges faced by patients, their families, and clinicians in this area of expertise. The HTAD Working Group, is built upon Multidisciplinary Centres of Excellence that have been collaborating and originating much of the recent progress in understanding Heritable Thoracic Aortic Diseases.
The John Ritter Foundation has joined with Chris Cairns and his wife Mel to curate resources and information for aortic disease patients and families in Australia and New Zealand.
The Aortic Dissection Charitable Trust
The Aortic Dissection Charitable Trust is the UK and Ireland charity uniting patients, families and the medical community in a shared goal of improving diagnosis, increasing survival and reducing disability due to aortic dissection.
General information and blogs about living with Aortic Dissection
Patient Information: Aorta – Diseases, Diagnosis, and Therapy
A patient guide to understanding the Aorta, how it functions, and diseases of the Aorta. This guide provides patients, their families,,, and people interested in the topic with comprehensive and extensive information: about the aorta, its illnesses,,, and methods of prevention, diagnosis,, and therapy. The Deutsches Herzzentrum Berlin, is a medical research center in Berlin, Germany, that specializes in cardiovascular disease and cardiopulmonary transplantation.
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
Aortic Warriors was started by a small group of Aortic Dissection Survivors who believe every survivor should never feel alone. They provide support for aortic dissection survivors by connecting them with other survivors.
Communities on social media
Social Media has several communities that offer resources and support for patients, friends, and families touched by Aortic aneurysms and dissection. These groups include:
Abdominal Aortic Aneurysm Awareness
ACTA2 related heritable thoracic aortic aneurysm and dissection
ACTA2 Smooth Muscle Dysfunction Syndrome
Aortic Aneurysm Awareness Network
Aortic Dissection Support Group
Essential info toolbox for patients with aortic disease