International Federation of 
                               Marfan Syndrome Organizations

Thursday, August 1, 2002
8:30 - 11:00 a.m.
Baltimore, MD, USA

Meeting Minutes
Attendees:

Association Belge du Syndrome de Marfan - Belgium -
Yvonne Flemal Jousten
Patrick Flemal
Isabella Van Vlieberge
Cecile Chabot

Kontaktgroep Marfan - Flemish Part of Belgium
Wessel Carlier

Canada - Canadian Marfan Association
Laura Libralesso
Flavio Libralesso
Josipa Paska

Denmark - Landsforeningen for Marfan Syndrome
Ms. Bodil Davidson
Pernille Strauss

France Association - Francaise du Syndrome de Marfan (AFSM)
Paulette Morin
Francoise Weber, M.D.

Holland (Dutch Nederlands) - Contactgroep Marfan Nederland
Mr. Johan Wijlens
Mr. Steven Blok

Japan - Marfan Network Japan
Masayo Koto
Minako Hamada
Shinsuke Hamada
Yoko Shimozaki
Tokuo Shimozaki

Norway - Foreningen for Marfan Syndrome
Helga Straume

Switzerland - Marfan Stiftung (Schweiz)
Beatrice Preston
Christopher Preston
Simone Preston
Andree Schaeren
Thomas Wyser
Violaine Gatti

National Marfan Foundation - United States
Priscilla Ciccariello
Carolyn Levering
Josephine Grima
Eileen Masciale
Judy Gibaldi
Karen Wolk

1. Introduction and Greetings

2. Review Statement of Purpose - A motion was made to amend the Statement of Purpose in the following ways:
a. Point 2 changed FROM:
The purposes of IFMSO shall be (1) to provide information about the Marfan syndrome to patients, family members, physicians and other health professionals throughout the world (2) to foster and encourage biomedical, clinical and other forms of research related to the Marfan syndrome and (3) to assist its member organizations in fulfilling their individual goals and objectives.
TO:
The purposes of IFMSO shall be (1) to provide referrals and links to access information about the Marfan syndrome for patients, family members, physicians and other health professionals throughout the world (2) to foster and encourage biomedical, clinical and other forms of research related to the Marfan syndrome and (3) to assist its member organizations in fulfilling their individual goals and objectives.
b. Point 5 changed FROM:
The advisory Board may elect a chairman and secretary from among the members of the board to facilitate the operations of the board and the IFMSO. The chairperson, and secretary will serve for a term of three years….
TO:
The advisory Board may elect a chairman, secretary and treasurer from among the members of the board to facilitate the operations of the board and the IFMSO. The chairperson, secretary and treasurer will serve for a term of three years but in the event that their successors are not chosen at the conclusion of their three-year term, they will continue to serve until such successors are elected.

3. Election of Officers:
a. Priscilla Ciccariello (US) was appointed President for the next three years 2003 -2005
b. Laura Libralesso (Canada) will act as treasurer for the next three years 2003 -2005 and responsibilities include setting up and maintaining an account for IFMSO dues; payment of website charges; and development of budget for proposed expenses.
c. Cheryl Williams (US) will act as secretary for the next three years (2003 -2005) and responsibilities will include minute-taking at meetings, distribute materials for membership, keep updated information on contacts; send out e-alerts for website updates every four months.
d. Peter Ciccariello (US) will act as webmaster for the next three years (2003 - 2005) and responsibilities will include updating website every four months and triage incoming e-mails to the appropriate country

4. IFMSO Brochure and Fact Sheet Update - IFMSO Brochure and Fact Sheet will be updated with final approval from member organizations and placed on website so that each organization can print and disseminate brochures from their office.

5. IFMSO website
a. It was determined that the website should include a few sentences in the appropriate language about the each of the member organizations.
b. Webmaster needs to modify website to accept double-byte language for Japanese character as outlined by Tokuo Shimozaki. Mr. Shimozaki will contact webmaster, Mr. Peter Ciccariello, regarding technical modification of website.
c. Website should be divided into sections for individuals and organizations for communication at the leadership level. There was discussion on how the website can respond to individuals that do not have an organizations. Currently all individual requests are directed to the country of the requestor. There is still a problem with those individuals which do not have an organization in their country. This requires further discussion to determine IFMSO formal policy.
d. Wessel Carlier to write up guidelines for material inclusion in the organizational section of the website which will include contact information, leadership information, medical advisory board information. Priscilla Ciccariello will follow-up.

6. Proposed site of 7th International Symposium and IFMSO meeting - A motion was made to accept Anne DePaepe of Ghent offer to host the 7th International Symposium in 2005.
a. Yvonne Jousten and Priscilla Ciccariello to communicate offer to her.
b. Symposium would be geared mainly to researchers and physicians however, IFMSO
board members would be allowed to participate.
c. Inclusion of training session for physicians if possible.

7. Resolution of Annual Dues - will remain at $25.00 per year which should cover costs of website. Member organizations would like the opportunity to pay several years at a time since it is quite costly to convert monies.

Submitted by: Josephine Grima, Ph.D., Director of Research, NMF
Approved by: Carolyn Levering, President and CEO, NMF 9/6/02
Cheryl Williams, Secretary, IFMSO 9/12/02
Priscilla Ciccariello, President, IFMSO 9/12/02

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