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IFMSO Member News
The following is a preliminary announcement of the NMF’s 18th Annual
Conference and tentative agenda for the IFMSO meeting. The final announcement will be featured in the Spring issue of the
NMF’s newsletter, Connective Issues and also will be available on this web
site.
18th Annual National Marfan Foundation
Conference
2nd International Workshop for People with Marfan Syndrome
International Federation of Marfan Syndrome Organizations
Co-sponsored by The Johns Hopkins Hospital
July 31 – August 3, 2002
Baltimore Marriott Waterfront Hotel Baltimore, Maryland
International
Federation of Marfan Organizations (IFMSO)
August 1, 2002
- 9:00 a.m.
Baltimore, MD, USA
TENTATIVE AGENDA (IFMSO)
1. Introduction
2. Review Statement of Purpose
3. Resolution of Annual Dues
4. IFMSO Website and member websites
5. IFMSO Newsletter
6. Review Nosology
7. Elect New Officers (President, Secretary, Treasurer)
8. Next Site of 7th International Symposium
9. Next Site and Date of IFMSO meeting
TENTATIVE AGENDA
18th Annual National Marfan Foundation
Conference
Wednesday, July 31
Scheduled Events you may wish to attend and are
therefore optional:
• Capitol Hill Visit, Washington, DC
• Continental breakfast and briefing
• Educate legislators on the importance of funding for research
• Afternoon tour of Washington, DC
• Clinic: Echocardiograms at The Johns Hopkins Hospital (throughout the
day)
Thursday, August 1
• IFMSO Meeting
• Afternoon: Program Exchange Session and Training Workshop for NMF Chapter
and Support Groups and IFMSO members – Discussions of program strategies --
sharing of resources (educational materials, newsletters, hot lines, etc.) and
ideas on public awareness, medical education and support of people with Marfan
syndrome
• Evening: Gala Opening Reception and Registration
• Teen get-together
• Clinic: Orthopedic and Opthalmological exams at the Johns Hopkins Hospital
(throughout the day)
Friday, August 2
• Medical Day: Morning panel of medical experts on the Marfan syndrome.
Workshops are scheduled for the afternoon
• Youth Programs – separate, chaperoned trips are scheduled for children
ages 8-12 years and 13-19 years of age
• Night on the Town: Informal group outings, led by members of the
Baltimore-Washington Support Group. Options are dining in one of Baltimore’s
myriad of restaurants on the harbor (be sure to experience the local favorite by
partaking in a crab fest), boat trip to Fells Point and other interesting
and fun activities -- sign-up and information will be available at the
Registration Desk on-site
Saturday, August 3
• Consumer Day will focus on psycho-social problems and solutions for
living with the Marfan syndrome
• NMF Coffee House: dine on your own (enjoy another crab fest) and afterwards
bring your musical instruments and songs, poetry or comedy for entertainment
• A Resource Exhibit Area will be set up in the NMF’s Registration Area at
the Hotel. Each organization is invited to bring information such as posters,
banners, photos, newsletters, and anything which will feature each group’s
mission on spreading the word about Marfan syndrome.
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International
Federation of 
