遺伝性結合織病 市民公開セミナーについての投稿も掲載していただきました。
Dear Priscilla and members of IFMSO,

First, I always appreciate for your warm messages which give us hope.
We will never forget the year 2011 when 2 tragic events hit Japan; the East Japan Big Earthquake and failure of Fukushima Dai-ich Nuclear Power Plant. Although disaster-struck areas still face severe situation, we are thankful for the kind support and prays from all over the world.
After these disaster we did what we can do now; we hosted a seminar for Maran, Loeys Dietz and Ehlers-Danlos syndrome affected people in corporation with other patient associations and researchers. It consisted of a questionnaire on disaster, presentation of the latest research of each disorder, Q&A, group works (blood vessel, orthopedics, heredity and welfare) and informal social time. Marfan Network Japan (MNJ), Japan Ehlers-danlos syndrome Fellowship Association(JEFA), Dr. Hiroko Morisaki of National
Cerebral and Cardiovascular Center (NCVC), Dr. Yasunobu Hirata of Univ. of Tokyo, Dr. Atsushi Watanabe of Nippon Medical School and Dr. Tomosaki Kosyo of Shinsyu Univ. cohosted the seminar.

This wonderful seminar held for the first time in Japan conducted for 2 times (Tokyo- Nov 20, Osaka-Dec. 10). Dr. Hirata who represented research team on Marfan syndrome talked about diagnostic criteria for Japanese, out-patient section which see patients’ allover condition and relationship between periodontal disease and aortic aneurysm. From presentations of other doctors, we could know the difference and common points among related disorders. At the Q&A session, there was a question on exposure to radioactivity from CT and a request to foster research and social support.

The attached picture is taken in Osaka. About 140 people were participated. Many doctors, esp. Dr. Hiroko Morisaki of NCVC, genetic counselors and members of patients associations supported us to conduct the seminar. We will make further effort to support affected people from connective tissue disorder and to enhance research by conducting seminars like this together with those who have the same goal.

I wish the coming year 2012 will be peaceful and hopeful one for all of you and us.

プリシラさん、 IFMSO の仲間たち

私たちはこの災害をきっかけに、私たちが今できることを考え実行しました。マルファン症候群やロイスディーツ症候群やエーラスダンロス症候群の患者家族のために、関連の患者団体と研究者たちと開催するセミナーです。内容は、災害時における課題や備えについえのアンケート、それぞれの疾患に関する最新の研究報告、質疑応答、グループワーク(血管・整形・遺伝・福祉など)、交流会です。マルファンネットワークジャパン(MNJ)、Japan Ehlers-danlos syndrome Fellowship Association(JEFA)、国立循環器病研究センター森崎裕子先生、東京大学平田恭信先生、日本医科大学渡邉淳先生、信州大学古庄知己先生とともに開催しました。