Purpose of Establishment

   This organization was formally established on December 15, 2003 to succeed the activity of late Dr. Shuhei Ogita, who was a pediatric surgeon and the great developer of a new therapy for the treatment of lymphatic malformations, and to support the patients of all over the world suffering from lymphatic malformations. Lymphatic malformations (formerly called "lymphangiomas") are localized malformations of the lymphatic system, which normally appear by the age of five years old. Lymphatic malformations most frequently affect the neck and make breathing difficult by compressing the respiratory tract and trachea, causing the patients to death due to dyspnea. Although histologically benign, lymphatic malformations may extend to the surrounding tissues like a malignancy. Due to this, complete surgical excision without damage to surrounding vital structures and also without cosmetic problems was almost impossible. With incomplete excision, disease recurrence was very high. But surgical excision has been the treatment of choice for years as no appropriate replacement was available, placing a heavy psychological and economical burden on the patients. In 1986 Dr. Shuhei Ogita, a pediatric surgeon of Kyoto Prefectural University of Medicine, found OK-432 therapy, where OK-432 (specific medicine against lymphatic malformations) is injected into the cyst and it reduces the size of, or completely removes the lymphatic malformation. Since its initial use, OK-432 therapy has become highly commended as success stories increased and further research promoted its effect. OK-432 therapy soon became a standard treatment procedure for lymphatic malformations in Japan. However, becuaswe OK-432 was not distributed outside Japan, the only way was to receive. In addition, expenses to receive the OK-432 therapy also required a full month of accommodations per session of treatment - full treatment requiring several sessions. Wanting to help children from abroad unable to receive the OK-432 therapy due to financial difficulties, Dr. Ogita established the "Little Carlos Fund" (named after the patient from which the fund was established) in September 1992 to help raise funds for these children. Thereafter, as an objective to equally treat all children diagnosed with lymphatic malformations despite medical circumstances and financial problems, Dr. Ogita and the "Little Carlos Fund" started to assist patients of lymphatic malformations by undertaking the following procedures: Disclosure of information on OK-432 therapy online Offer of OK-432 (Picibanil) upon request Leadership and assistance in education in treating lymphatic malformations Step by step, Dr. Ogita's efforts paid off. Doctors and medical institutions from many countries began to support OK-432 therapy, and the number of patients able to get treatment in one's home country has been rising steadily. However, as of July 2015, Japan and Taiwan are the only countries that OK-432 is distributed. More activities are required to change this course. On April 21, 2003, Dr. Ogita died at a young age of 55. As the developer of OK-432 therapy, savior of many patients of lymphatic malformations, and great contributor to the world to pioneer the new treatment, Dr. Ogita held the faith that "efforts are to be done in order to make results of my research available to all the patients." Commending the great achievements of the late Dr. Ogita, we will continue to support patients of lymphatic malformations under the "Shuhei Ogita Fund" (formerly the "Little Carlos Fund"), through the practice of the three undertakings mentioned above.

What we do

1. 海外の医療機関に対する薬剤OK-432(ピシバニール)  の人道的無償提供事業に関するコーディネート
 

OK-432(ピシバニール)は日本と台湾以外でのみ販売されている薬剤です。その他の国々のリンパ管種患者は自国で治療を受けることができません。そこで、同薬剤製造・販売元である中外製薬株式会社は人道的見地からOK-432を無償提供しています。

当基金は同事業のコーディネートを担っています。

3. 治療法の指導を中心とした医療援助

現地からの要請に基づいて、治療経験豊富な当基金協力医師を派遣し治療指導を行います。

2.リンパ管腫患者への支援やリンパ管腫治療に関する普  及啓発・情報提供

インターネットを通じてリンパ管腫治療OK-432局注療法に関する普及啓発・情報提供等を行っています。また、FacebookなどのSNS等を活用

して、患者さん同士の情報交換、交流の場を提供しています。

2.リンパ管腫患者への支援やリンパ管腫治療に関する普  及啓発・情報提供

インターネットを通じてリンパ管腫治療OK-432局注療法に関する普及啓発・情報提供等を行っています。また、FacebookなどのSNS等を活用

して、患者さん同士の情報交換、交流の場を提供しています。

2.リンパ管腫患者への支援やリンパ管腫治療に関する普  及啓発・情報提供

インターネットを通じてリンパ管腫治療OK-432局注療法に関する普及啓発・情報提供等を行っています。また、FacebookなどのSNS等を活用

して、患者さん同士の情報交換、交流の場を提供しています。

4.来日を希望する患者および家族の通訳サポート

難治性リンパ管種で自国に治療できる医師がみつからない場合や、政府の薬剤輸入許可証が下りない場合など、自国での治療が受けられず来日を希望する患者さんおよび家族を言語面でサポートします。

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NPO International Lymphatic Malformations Network