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Support Groups & Organizations

Adult Congenital Heart Association (ACHA)

Adult Congenital Heart Association (ACHA) is a national organization for adults, and adolescents, with congenital heart disease (CHD). The purpose of ACHA is to educate the public, adults with CHD, and the medical community about adult congenital heart issues through the development of forums, newsletters, support groups and other methods of public information.

Adult Congenital Heart Association (ACHA)

6757 Greene St., Suite 335
Philadelphia, PA 19119-3508
Phone: 215.849.1260
Toll-free: 888.921.ACHA
Fax: 215.849.1261
Email:* (for general questions and comments)

American Heart Association

The American Heart Association is nonprofit organization, whose mission is to reduce disability and death from cardiovascular diseases and stroke. Volunteers and staff, work to meet these goals through supporting research, providing resources, education and support to those with heart disease or those at risk, and acting as national advocate.

American Heart Association National Center

7272 Greenville Ave.
Dallas, Texas 75231
Phone: 216.791.7500
Toll-free: 800.AHA.USA1

American Heart Association Related Sites
American Stroke Association

Affiliated with the American Heart Association, the American Stroke Association provides information and support to over 1,850 stroke groups and more than 150,000 stroke survivors, caregivers and healthcare professionals throughout the country.

American Stroke Association National Center

7272 Greenville Ave.
Dallas TX 75231
Toll-free: 888.4STROKE or 888.478.7653
Email:* (for general questions and comments)

Ben's Friends

Ben's Friends is an international organization that builds online support communities for people affected by rare diseases (patients and their family/friends/caregivers/medical professionals). The organization’s mission is to ensure that everyone with a rare disease has a safe place to connect with other people like them.

Ben's Friends

2450 Louisiana St. #400-166
Houston, TX 77006
Email * for general questions and comments

Canadian Adult Congenital Network

The CACH Network was created to pool the knowledge and experience of congenital heart disease professionals in Canada to help strengthen their skills and knowledge of the discipline, and to create a community of individuals committed to caring for adults with congenital heart disease-and their families. offers information and resources for people with Congenital Heart Defects (CHD), including definitions of medical terms, hospitals caring for people with CHDs, links to support groups, articles regarding CHDs, and resources for the CHD community.

Baby Hearts Press
3910 Sierra Blanca Blvd.
Temple, TX 76502-1662
Phone: 254.778.4770
Toll-free: 888.222.4649
Fax: 254.778.4772
Email (for general questions and comments):*

Congenital Heart Information Network

Congenital Heart Information Network (C.H.I.N.) is an international organization that provides reliable information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.

C. H. I. N.
101 N Washington Ave., Suite 1A
Margate City NJ 08402-1195
Phone: 609.822.1572
Fax: 609.822.1574

Fibromuscular Dysplasia Society of America (FMDSA)

Fibromuscular Dysplasia Society of America (FMDSA) is an organization for the purpose of Fibromuscular Dysplasia (FMD) awareness, education, and research.

20325 Center Ridge Rd., Suite 620
Rocky River, Ohio 44116
Phone: 216.834.2410
Toll-free: 888.709.7089

Healthwise Connection

This free Cleveland Clinic hospitals' program entitles you to special discounts and services available exclusively to Healthwise Connection members. Our program is open to all people age 50 and older who are interested in preserving and protecting their health, while saving money and savoring new experiences.

H.E.A.R.T. for Cardio-Athletes

H.E.A.R.T’s mission is to provide an opportunity for heart patient runners and walkers of all abilities and their families to meet, support, and form lasting friendships with others who have taken control of their lives after being diagnosed and treated for life threatening heart conditions. By example we actively promote the idea that athletic training beyond basic fitness levels can make a big difference in many heart patient’s long term survival while maximizing their quality of life.

Hypertrophic Cardiomyopathy Association (HCMA)

The Hypertrophic Cardiomyopathy Association (HCMA) was established in 1996 as a support organization focused at providing information and support to those with HCM, their families and the medical community.

Hypertrophic Cardiomyopathy Association
328 Green Pond Rd.
P.O. Box 306
Hibernia, NJ 07842
Phone: 973.983.7429
Fax: 973.983.7870

International Society for Adult Congenital Heart Disease

The purpose of the International Society for Adult Congenital Heart Disease is to promote, maintain and pursue excellence in the care of adults with congenital heart disease. The Society is dedicated to the advancement of knowledge and training in medical disciplines pertinent to congenital heart disease in adults.

International Society for Adult Congenital Heart Disease
1500 Sunday Drive, Suite 102
Raleigh, NC 27607
United States of America

Klippel Trenaunay (KT) Support Group

The Klippel-Trenaunay Support Group (K-T Support) welcomes patients and their families as members and provide information about the group and about Klippel-Trenaunay (K-T, KT, KTS) Syndrome, a combined vascular malformation.

Living with Valve Disease

Living with Valve Disease

A collection of educational resources for people affected by heart valve disease.

May Thurner Syndrome Facebook Support Group
Mended Hearts

Mended Hearts is a national organization dedicated to providing support and inspiring hope in heart disease patients and their families for more than 60 years. Mended Hearts of Greater Cleveland is a chapter of this national nonprofit organization. Mended Hearts helps people understand that there can be a rich, rewarding life after a heart event. They bring patients, families and caregivers together to form a network of caring individuals. Members listen, share their experiences and learn from healthcare professionals.

For dates of upcoming support group meetings and more information, visit or email

For our national office, visit

The Mended Hearts, Inc.
8150 N. Central Expressway, M2075
Dallas, Texas 75206
Information Line (Toll-free): 888.HEART99 (1.888.432.7899)
National Office: 214.296.9252
Fax: 214.295.9552

The Marfan Foundation

The Marfan Foundation is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.

The Marfan Foundation
22 Manhasset Ave.
Port Washington, NY 11050
Phone: Toll Free: 800.862.7326; Telephone: 516.883.8712

The Patient’s Guide To Heart Valve Surgery - Adam's Heart Valve Surgery Blog

Adam Pick, a double valve surgery patient blogs about heart valve replacement and heart valve repair surgery. His Heart Valve Journals section allows patients and family members interact with other valve surgery patients.

Phone: 888-725-4311 is a patient-to-patient resource to help you control your atrial fibrillation so it doesn't rule your life. It's goal is also to build an atrial fibrillation community through communication, conversation, and collaboration at their StopAfib Discussion Forum and Atrial Fibrillation Blog.

P.O. Box 541
Greenwood, Texas 76246-0541

Sudden Arrhythmia Death Syndromes (SADS) Foundation

Sudden Arrhythmia Death Syndromes (SADS) is a nonprofit organization, established for the purpose of helping to prevent sudden and unexpected cardiac death in children and in young adults. The SADS Foundation is committed to supporting families and individuals with genetically mediated cardiac arrhythmias through education, research, and advocacy.

Sudden Arrhythmia Death Syndromes (SADS)

508 E South Temple, Suite 20
Salt Lake City, UT 84102
Toll-free: 800.STOP.SAD or 800.786.7723
Email:* (for general questions and comments)

TRIO: Transplant Recipient International Organization

Transplant Recipient International Organization (TRIO) is an independent, not-for-profit, international organization committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.

Transplant Recipients International Organization, Inc.

2100 M St., NW, #170-353
Washington, DC 20037-1233
Phone: 202.293.0980
Toll-free: 800.TRIO.386
Email:* (for general questions and comments)

Locally, TRIO meets the fourth Wednesday of every month at 6:30 p.m. at University Hospitals, Bolwell Hall on odd-numbered months, and at the Cleveland Clinic on even numbered months. Parking and refreshments provided. For more information, please call 216.473.8979.

Additional Resources

*a new browser window will open with this link. The inclusion of links to other web sites does not imply any endorsement of the material on the web sites or any association with their operators

Warning about Online Posting Boards/Chat Rooms

The Miller Family Heart & Vascular Institute at Cleveland Clinic is not responsible for the content or the performance of these sites. These sites may contain online chats or posting boards that provide an opportunity for users with a common interest or health care issue to communicate and offer support. Statements are opinion only and are not considered medically accurate. When posting medical information about you, please note that it is not a private forum. All information you post will be read by others.

Use these sites at your own risk including any risks associated with destructive viruses. Please remember that medical information, in the absence of a visit with a health care professional, must be considered of an educational or supportive nature only. It should not be relied upon as a medical consultation and is not designed to replace a physician's independent judgment about the appropriateness or risks of a procedure for a given patient.

Reviewed: 06/15

Talk to a Nurse: Mon. - Fri., 8:30 a.m. - 4 p.m. (ET)

Call a Heart & Vascular Nurse locally 216.445.9288 or toll-free 866.289.6911.

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