On September, 1st, 2018, NPO Shuhei Ogita Fund renamed ourselves to NPO International Lymphatic Malformations Network(ILMN) and started new activities.

In 1992, Carlos, a little Mexican baby who had been suffering from lymphatic malformations from birth, came to Japan with his parents by spending all the money to have a treatment with OK-432 by Dr.Ogita of Kyoto Prefectural University of Medicine who had developed the OK-432 treatment as the medicine is distributed only in Japan and Taiwan. Dr.Ogita got to know their financial difficulties and founded “Little Carlos Fund” and worked on Japanese society for donations. A lot of Japanese responded with good will and Carlos and his parents could come to Japan totally 4 times for treatment through the fund. 

Dr.Ogita continued to support overseas lymphatic malformations patients who could not have the treatment with OK-432 by sending this medicine and advising treatment method through the Little Carols Fund ever since. However, he passed away at the young age of 55 in April 2003.

Then, the volunteers gathered with the senses of crisis that Dr.Ogita’s humanitarian activities he had been engaged in for many years for overseas patients might be discontinued and it lead them to lose the access to OK-432 treatment suddenly. In December of the same year of Dr.Ogita’s death, they renamed Little Carlos Fund to NPO Shuhei Ogita Fund re-launched the activities.

Dr.Ogita had been provided OK-432 from Physician to Physician base. After his death, Chugai pharmaceutical company, a manufacturer of OK-432 set up the donation program for overseas patients on humanitarian ground. NPO Shuhei Ogita Fund started to work with them for application reception of the program and handled inquiries from overseas as our main activity. From January 1, 2018, as Chugai started handle all of works of the donation program including the application reception work, we reviewed our activity and started new activity to support both domestic and overseas patients and their families in many ways and renamed us “NPO International Lymphatic Malformations Network” on September 1, 2018.

 

When we consider renaming, though we wish to use Dr.Shuhei Ogita's name as he made great achievements on the lymphatic malformations treatment in the world, we decided to rename "International Lymphatic Malformations Network(ILMN)" as we remember Dr.Ogita's wish to support all lymphatic malformations patients and he may be pleased to know that this name represents our activity's goal to support all lymphatic malformations patients with the cooperation of patients and non-patients.

Another big change of our activity is to start supporting domestic patients though we had been supported mainly overseas patients who could not get the OK-432 in their countries. We are considering providing the place where the patients can talk their worries and troubles each other with respecting privacy each other in cooperation with the patients who already have been working for supporting activities individually.

We appreciate your kind support to new-born NPO ILMN.  

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NPO International Lymphatic Malformations Network