Send information about local events to jnavia

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Online fundraising for the National Marfan Foundation

SupportMarfan.com
When you visit certain online shops (Amazon.com, Land's End, Target and others) through the SupportMarfan.com website, the retailer will donate a certain percentage of the sale to the NMF.

Henry's Hearts
Send a gift basket to someone and support the NMF! Co-founded by a 10-year-old boy named Henry who has the Marfan syndrome, this website offers wonderful gift baskets of high-quality goodies. 30% of the purchase price is donated to the NMF.

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Books or Chapters in Books

Own Your Health
Roanne Weisman and her son have Marfan, and in some sections of the book they share their experiences.

The Truth About Chronic Pain
A whole chapter is about Mathew Rudes' experiences. Mathew was born with severe Marfan symptoms.

Chicken Soup for the Fisherman's Soul
Jennie Logsdon Martin has a story in here. Her story is as much about living with the Marfan syndrome as it is about fishing.

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Websites by Marfan Patients to Help Other Marfan Patients

• Janis Cortese's Marfan pages Lots of great info on living with the Marfan syndrome!
• Jon's Living with Marfans
  • Jon's Social Security Disability Check List
• Miriam Shpak's home page
  • Marfan info in Hebrew
• Tall Paul's Tall Mall The store for tall people. Beds and linens, chairs, office furniture, and other goods for very tall people. Even a "toilevator"!

Marfan Communities

• Long Tall Folks' Journal A Live Journal community
• Yahoo! Group Marfans Support and Chat
• Yahoo! Group Marfans Support Group
• Yahoo! Group Massachusetts Marfan Group
• Yahoo! Group Mega Stringbean's "the ORIGINAL skinny club!" Age-restricted. Must be a Yahoo! member, over 18, to access
• Yahoo! Group Christians With Marfans
• MSN Group Living with Marfans
• MassMarf - Massachusetts Marfan Group
• Marfan support and information in NSW (New South Wales, Australia)
• Marfan Association UK Forum Once there, click on Forums
• Marfan Life Forum
• Mailing List van Marfan.nl in Dutch
• Contactgroep Marfan Nederland in Dutch
• Marfan Francophone a Yahoo! group in French
• Yahoo! Group Marfan Syndrome in Singapore

Local Chapters of the National Marfan Foundation

• Heart of Iowa Chapter of the NMF
• Northern California Chapter of the NMF
• Oregon Chapter of the NMF
• Washington-Baltimore Area Support Group Chapter of the NMF
• NMF Massachusetts Chapter