The government of India has finalised and approved the National Policy for Treatment of Rare Diseases. With an affidavit filed in the Delhi high court on Thursday (May 25), the Union health ministry also submitted a copy of this national policy.

See the report on the WHO website

The inauguration will be at the United Nations Headquarters in New York.
Watch live stream: Global Gathering for Rare Diseases

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An article published in the Orphanet Journal of Rare Diseases consists of information from six Southeast Asian countries on management of rare diseases based on the World Health Organization’s framework for action in strengthening health systems. See the full article

The aim is to collect data on how specific RD progress in individuals over time so that knowledge can inform and support product development and approval. Grant applications will be due Oct. 14, 2016
For further information visit the website

The Minister of Social Affairs and Health, Marisol Touraine, has announced that a third national plan for rare diseases would soon be launched, continuing from the previous two plans. Read the press release.

 Read his interview on EURORDIS website

A mixed report but recommending a 3rd Plan. Read the document.

This guide describes the different types of information the Agency currently publishes for both centrally and non-centrally authorised medicines, as well as publication times and location on EMA’s website.  It aims to help stakeholders know what kind of information to expect on medicines undergoing evaluations and other regulatory procedures. The same information described in this document is presented in a tabulated format in the Annex.
Whilst reflecting the current practice, the guide is not intended to provide an exhaustive list of EMA publications, and EMA may at its discretion publish additional documents as appropriate. Other nonconfidential documents held by EMA which are not published may be provided to stakeholders upon request.