International Federation of Marfan Organizations (IFMSO)
International Meeting, Baltimore
Thursday, August 1, 2002
8:30 - 11:00 a.m.
Baltimore, MD, USA
Association Belge du Syndrome de Marfan - Belgium -
Yvonne Flemal Jousten
Isabella Van Vlieberge
Kontaktgroep Marfan - Flemish Part of Belgium
Canada - Canadian Marfan Association
Denmark - Landsforeningen for Marfan Syndrome
Ms. Bodil Davidson
France Association - Francaise du Syndrome de Marfan (AFSM)
Francoise Weber, M.D.
Holland (Dutch Nederlands) - Contactgroep Marfan Nederland
Mr. Johan Wijlens
Mr. Steven Blok
Japan - Marfan Network Japan
Norway - Foreningen for Marfan Syndrome
Switzerland - Marfan Stiftung (Schweiz)
National Marfan Foundation - United States
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
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….
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
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
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,
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