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Group Description

THE ELEPHANT PROJECT

This is an international group dedicated to supporting patients who suffer from a specific triad of disorders: Autonomic Dysfunction (such as POTS, NMH, NCS), Mast Cell Disorders (such as Mastocytosis, MCAS) and Hereditary Connective Tissue Disorder (such as EDS, Marfan's)

When three supposedly rare illness occur at once, physicians tend to focus on their specific area of expertise without looking at the WHOLE patient. This is reminiscent of the fable about the three blind men who each describe an elephant by feeling three distinct parts (the trunk, body, and tail)- never realizing they are all describing the SAME animal. Our goal is to provide a place for patients to gather, to share their stories, and to collect information for physicians to advance understanding of why this unique constellation of disorders occurs.

Sufferers, their family members, caregivers, interested physicians, and ALL who want to learn more about this triad of illnesses are welcome.

Group Information

  • 236
  • Support
  • Jun 11, 2011
  • English

Group Settings

  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages are not moderated.
  • All members can post messages.

Message History