Yukiko Nishimura,the president of ASrid, gave a presentation at the inaugural meeting, NGO Committee for Rare Diseases, United Nation, New York, USA.

Date: November 11, 2016

Venue: Conference Room 8 (GA-1B-CR08), United Nations, New York (NY 10017)

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We made a short report about the conference.

The NGO Committee for Rare Diseases (CfRD) is a substantive committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO). On November 11, 2016, it hold Global Gathering for Rare Diseases: Inaugurating the NGO Committee for Rare Diseases. From Japan, Yukiko nishimura ( President, ASrid) and Kunihiro Nishimura (Vice-President, ASrid) joined the meeting, and Yukiko gave a presentation about Japanese situation of this area.

In the morning, it began with Keynote Addresses. At first, Mr. Cyril Ritchie, President of CoNGO 2011-2018 congratulated inaugurating the NGO Committee for Rare Diseases (CfRD). Then Mr. Navid Hanif indicated this area is social issue. And Mr. Anders Olauson, Chairman, Agrenska, introduced rare diseases and its global issue. Ms. Abbey S. Meyers, President Emeritus, National Organization for Rare Disorders (NORD) showed rare disease and orphan drug history in the US and proposed to expand this movement to other countries. Mr. Terkel Andersen, President of the Board of Officers, EURORDIS-Rare Diseases Europe, introduced their activities in Europe. Me. Yann Le Cam, Chief Executive, EURORDIS-Rare Diseases Europe, had a talk about Rare Disease International (RDI) for the community of this field.

After that, leaders from each countries, from Europe, North America, Latin America, Russia, Middle East and Central Asia, Africa, Japan, China, Malaysia, and Australia, introduced their activities of their countries. We also have video messages from India and Iran, and Portugal has a comment for this meeting.

Yukiko gave a 5 minutes presentation about Japanese recent situation of NANBYO. At first, She explained the word of NANBYO, and the target of NANBYO (rare, intractable/incurable, and chronic diseases). Next, she introduced the recent progress of NANBYO policies and challenges. Then she introduced the video message from three Japanese leaders for celebrating NGO committee for Rare Diseases; 

Dr. Makoto Suematsu, President of Japan Agency for Medical Research and Development （AMED）
Dr. Takao Takahashi, Professor of Keio University / President of Japan Pediatric Society
Dr. Shigeaki Hinohara, Honorary Chair, the Board of Trustees, St. Luke's International University

All messages are incredible and the audience enjoyed watching these messages.
(We have shot other testimonial video from Japanese patients, and you will see them on the NGO website in the near future.)
Finally, Yukiko said that “I am sure today is a remarkable day for taking our first step, and I am so happy to discuss and work with all of you”.

In the session about diagnosis and care strategies, Ms. Vidhya Ganesh, Deputy Director, Program Division, United Nations children's Fund (UNICEF) has a comment for this area, then Mr. Lieven Bauwens introduced diagnosis of Spina Bifida and Hydrocephalus and Mr. Alain Weill introduces that of Hemophilia.

In the last session of the morning, Dr. Stephen Groft had a comment for research, regulatory, and translational research. Then Ms. Abbey S. Meyers introduced a story about Joseph. He is Portuguese and had rare diseases, but patients of the same disease found in Brazil, Japan, and so on. It's a small world. She mentions we can go forward by cooperating together.

　　　　　　　　　　　　　　　　　　　　Reported by K. Nishimura and Y. Nishimura (ASrid)

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＊Information about Inargual meeting：http://www.ngocommitteerarediseases.org/inauguration/

＊Press Release：http://www.ngocommitteerarediseases.org/wp-content/uploads/2016/11/Press-Release.pdf　

＊NGO Website：http://www.ngocommitteerarediseases.org/