The First Annual Melorheostosis Conference

July 18-20, 2003

St. Louis, Missouri

The 2003 Melorheostosis Conference was the realization of a dream to gather together  for the first time melorheostosis patients, their families and friends, and treating physicians.  This gathering resulted in a full weekend of invaluable information, personal sharing and exciting plans for the future.   

Among the highlights of the Conference were:

• plans for the formation of The Melorheostosis Association, a not-for-profit organization, and application for tax exempt status
• a working draft of the Mission Statement for the organization
• a fascinating and informative presentation by Mike Schroeder, Director of the ALS Hope Foundation, “Creating a Not-for-Profit Organization for a Rare and Incurable Disease: a Message of Hope” including screening of the organization’s powerful promotional video
• sharing, sharing, sharing of personal histories, information, and experiences
• discussion of potential short-term and long-range plans