Support 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.

Support groups and resources

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.

The Hoag Aortic Dissection Survivor Support Group

The Hoag Aortic Dissection Support Group provides mutual emotional support and information for thoracic aortic dissection survivors, their families, and provides a support network. This group is facilitated by a licensed nurse practitioner and genetic counselor from the Elaine & Robert Matranga Aortic Center. Please note, this group is intended for thoracic aortic dissection survivors.

Aortic Hope

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.

Mended Hearts, Inc.

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.

Disease specific organizations

The Marfan Foundation

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

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

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

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.

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.

VASCERN

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.

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.

Rare Connect

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

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

Survivors of Aortic Dissection

DiseaseMaps