Massachusetts Community Group National Marfan Founcation

Record last updated 2022/12/07 Comment on this info .Update this info

Contact Information

National Marfan Founcation
Contact: Jon Rodis, Chapter President
Email Address:
Phone: 617-846-4975

22 Manhasset Avenue Port Washington, NY 02152
Area Served: Out of State

Map Location Massachusetts Community Group


Massachusetts has a Marfan Community Support Group. 

The National Marfan Foundation is the source for accurate information about Marfan syndrome and related connective tissue disorders.  They focus on education, research and support.  The chapter provides a local contact for those affected by Marfan and other related connective tissue disorders and their families.  We offer quarterly "Heart to Heart" support sessions, education programs and fundraising as well as a bridge to the Marfan Clinics at Children's Hospital Boston and Brigham and Women's Hospital. We also offer support in getting approved for social securtiy disability.

Service Types

  • Disability Awareness
  • Family Support
  • Socialization Activities

Program Type

  • Advocacy
  • Support Groups

Populations Served

  • Ehlers-Danlos Syndrome

Ages Served

  • Birth to 3
  • 3 - 4
  • 9 - 13
  • 14 - 18
  • 19 - 22
  • 23 – 59
  • 60 +

Accessibility Features

  • Accessible Parking
  • Accessible Restrooms
  • Elevators
  • Services at Home
  • Services at School
  • Wheelchair Ramps

Additional Information

  • Fees: Free Service