Dear Friends:
I hope that you have all had a chance to look at the March newsletter featuring
MEXICO.
Geraldine Duran did such a wonderful job and took many hours to help us
try to get the text correctly and to have the proper spellings and accents
on the Spanish version. I can see the time when we will perfect the "system"
and with everyone’s help， the newsletter will be even better.
We will be featuring France in the next newsletter in June， since the European
Marfan Support Network (EMSN)， hosted by the French Marfan Association，
will be celebrating Antoine Marfan’s birthday in September at his birthplace
in beautiful Castelnaudary， in the southwest of France. It promises to
be another important conference and also an opportunity for the European
organizations to celebrate an important date in the Marfan world.
We also have received much interesting material from the Polish Marfan
Association， and will feature this organization in the September newsletter.
There is so much being done in the various Marfan organizations， that we
may find that we have to feature two organizations in each newsletter.
Time will tell.
Along that subject: The rest of the web site needs updating， and webmaster，
Peter， needs your help. The "Grants" page has only two countries’
grants programs listed， the National Marfan Foundation (U.S.) and the Canadian
Marfan Association. When I go to their web sites， I can find information
about their research grant programs.
This information has been sent to the IFMSO and is linked to the grant
page of the organizations.
I would like to add the research grant programs of the other countries.
If you have a grant program that you would like listed， please send in
your information or the link to the grants page on your organization’s
web site and we can add this information to the IFMSO web site.
This page can provide the researcher with a link to money for research
and also illustrate how the worldwide Marfan organizations are supporting
research.
If you have any questions， please e-mail and we can discuss themThe IFMSO
web site serves to promote the activities of all Marfan organizations throughout
the world. It doesn’t matter how big your organization is. Perhaps your
"grants" program is primarily supporting a clinic or a single
research center.
This information is interesting and serves to provide ideas to all of us
on different ways for "outreach."
I look forward to hearing from you regarding your various research grant
programs.
Sincerely yours，
Priscilla Ciccariello
President， International Federation
of Marfan Syndrome Organizations (IFMSO)
<要訳>
先日のマルファンワールドの記事を見ていただけましたか？というご案内と次の号の予定です。
http://www.marfanworld.com/
今回の号はメキシコの会の紹介です。そして、マルファンの周知活動のためにポスターコンテストの入賞作品が載っています。
次回はフランスの特集で、ヨーロッパの患者会がマルファン博士を偲ぶ集まりを予定しているということです。
また、ポーランドからの報告も予定していますとのことです。
また、現在、NMFとカナダの会がマルファン症候群に関する研究のための助成金事業を行っていますが、他の国でそのような計画があったら、このホームページで、同じようにリンクさせてお知らせしたいのでよろしくとのことです。
患者会が研究者に助成金を出して、研究をしてもらうというのはずいぶん会に体力があるのですね。
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