Your resources and supports
As you, your child and family begin to find your way through the world of Marfan and other related disorders, having adequate resources and supports can be extremely beneficial. One of the goals of the Marfan Foundation is to create and make available these resources and supports.
You may find that counseling either through peer groups or professionally, can be helpful for people who are going through a tough time. To access local counseling services, go to your state’s official mental health website and see which program is right for you. The Marfan Foundation also provides counseling services through our Help & Resource Center, Telephone Support Groups, and Online Support Groups.
Often it is beneficial for a young person with Marfan to talk with another young person who has the same diagnosis. If surgery has been recommended, it can be very helpful to speak with someone who has had the same or similar surgical procedure, remembering at the same time that Marfan syndrome varies from person to person, even within the same family, and experiences with major events like surgery tend to vary as well.
The Help & Resource Center
Individuals, family members, medical professionals, and other healthcare providers can access a wealth of information and resources about Marfan syndrome and related disorders through The Help and Resource Center. We can also connect you with others who may have experienced a similar problem. The center can be contacted:
- Monday-Friday from 9:00 am-5:00 pm eastern time.
- Either by calling 800-8-MARFAN (800-862-7326), ext. 126 or by email: email@example.com
Marfan CONNECT is our online community that allows people impacted by Marfan syndrome and other related disorders to link with others through online groups and forums. There are more than over 100 different groups such as The Parents Place, Teen Spot, Young Adults 18-35 Group, Family Member Support, and Living with Marfan 30-40. You can also participate in our forum discussions, where members of our community can discuss various issues.
Telephone Support Groups
Phone support groups are a great way to connect with others in the Marfan syndrome and related disorders community. Support groups are run by professional staff and all information is confidential. Groups that are currently running on a monthly basis are:
- Young Adults (19-29)
- Gen X (30–50)
- Family and Friends
- Grief and Loss
For more information or to register for a group email firstname.lastname@example.org
Local Chapters and Community Groups
Through the Marfan Foundation you can connect with local chapter and community groups throughout the country. These groups run fundraising, support and social events which are wonderful opportunities to interact with others who are experiencing issues similar to your own. If you are new to a community or just new to Marfan then becoming involved with a local group is a definite “must do”. https://www.marfan.org/secure/community-support
The Annual Conference provides people living with Marfan syndrome and related disorders, and their families, an opportunity to learn about these conditions from the country’s medical experts, hear about the latest research, and connect with other people who are on the same medical journey. These connections often lead to life-long friendships for both the affected and unaffected attendees. Those attending for the first time are eligible for scholarships.
The 3 -day conference features programs, workshops and field trips for every age group and attendees who are interested can also receive a free medical screening and assessment from the medical institution that is co-hosting the conference. This is truly a benefit for those who do not have access to expert medical care near their home or lack healthcare adequate coverage.
Other Available Resources
The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
The cardiology or genetics department of a university medical center or teaching hospital may also be able to provide expertise.