Inauguration meeting


A significant step forward in global rare disease policy occurred in New York on 11 November 2016. A group of 35 delegates from rare disease organisations, and other stakeholders, supported by a similar number of observers, made enthusiastic and passionate presentations about the state of rare diseases worldwide, as they launched the UN’s NGO Committee for Rare Diseases (CfRD). Four ICORD board members were present for this event.

The major organisational efforts to set up the committee came from the Ågrenska Foundation in Sweden, and EURORDIS, and both organisations deserve great credit for their efforts. ICORD’s contribution to the meeting came from Past-President John Forman, and fellow ICORD board members Stephen Groft, Yukiko Nishimura, and Ramaiah Muthyala, who spoke from their own institutional or country perspectives.

The committee comes under the patronage of the Conference of NGOs in Consultative Relations with The UN (CoNGO) and this level of operation is a vital first step in establishing rare diseases at the highest international policy level. Over time, an ambition is to become a full committee of the UN itself.

Getting this committee established is a great milestone. What was also of great significance were the supporting policy statements received from a variety of global leaders, some of which ICORD played a lead role in obtaining:

  • The statement from Helen Clark, UNDP Administrator, to the ICORD meeting in Cape Town the previous month, was featured prominently at the CfRD launch.
  • The opening address to our Cape Town meeting from Ms MP Matsoso, South Africa’s Director-General of Health was also mentioned, with her connections to the WHO and the UN panel adding weight to her statements.
  • Also noted was the report from the UN’s high level panel on innovation and medicine access, to whom a submission was made by John Forman early this year while ICORD President. The panel’s final report made very specific mention of rare diseases as needing priority action alongside other public health priorities like infectious diseases, non-communicable diseases, and antimicrobial resistance. This is a very significant step forward in recognizing rare diseases as a public health priority.

Additional comments at the UN meeting from the executive director of the WHO, “it is a question of Justice”, and a positive statement from the UN Special Rapporteur on the right to health, clearly demonstrate that the rare disease community had a double victory at the UN meeting. First we got a place at the table, then as we arrived we found they had anticipated and accepted many of the policy positions and arguments we have fought for over many years.

The future suddenly looks brighter for rare diseases. This is a significant gain for our community, reinforced by frequent references by UN and WHO officials to the fundamental principle of the Sustainable Development Goals – “to leave no one behind” – which goals have been signed up to by all countries worldwide. This promises to add a new dimension to academic and policy debates about Public Health.

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