Rare disease advocate to address UN committee this Friday

John Forman – Rare Disease Advocate

Rare disease advocate John Forman will be presenting at the inaugural meeting of a Committee for Rare Diseases at the United Nations on Friday 11 November. The committee is being established under CoNGO, the conference of NGOs in consultative relations with the UN.

“This is a major step forward for rare disease policy at the international level’” says John. “It comes hard on the heels of a recent statement by Helen Clark, administrator of the UN Development Programme, that the needs of rare diseases are an essential element in the Sustainable Development Goals and the attainment of universal healthcare.” Click here for Helen Clark’s statement to the ICORD meeting in Cape Town 20 October 2016.

The statement from Helen Clark states the SDG’s “fundamental principle: to leave no one behind” and Forman comments that being left behind certainly does happen for many rare diseases, even in quite modern and generally very good health systems like New Zealand’s. “Experience in the analysis of rare disease impacts, especially in Europe, shows that relative neglect and poorer outcomes are widespread for patients with rare diseases, and a focused policy and an action plan are necessary to achieve balance in equity and health outcomes for rare disease patients and their families,” he says.

John Forman has been working with ICORD, the International Conference on Rare Diseases and Orphan Drugs,www.icord.se since 2005, holding the role of President from 2014 until the October Cape Town meeting. Getting rare diseases on the international health policy agenda has been his priority, and these recent developments are a major achievement, says Forman, but he adds, “There will be a certain irony for me when presenting at the inaugural meeting, as there will be for presenters from Australia, Canada and some other countries, to know that our own governments have studiously avoided any significant commitment to specific policy and services for rare diseases, compared to the very strong commitments made in Europe, Japan, Taiwan, and Korea. We certainly have some catching up to do.”

More information on the UN Committee for Rare Diseases

Agenda for CfRD inaugural meeting 11 November 2016

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