Several years of background work have borne fruit with a written statement on the needs of rare diseases being presented at the opening session of the October 2016 ICORD meeting in Cape Town, South Africa, on behalf of Helen Clark. Writing in her capacity as Administrator for UNDP, Helen’s statement is very significant as the first official statement from such a high level in global health and development affairs, about the needs of rare diseases. It is also significant for the important principles it states:
• That rare diseases are an important part of the development agenda and the sustainable development goals.
• That no country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.
• That greater investments are required from governments to address the absence of adequate market incentives for unmet health needs such as rare diseases.
• That sustainable development requires whole of government and society responses, and ICORD as a multi-stakeholder society, offers a model of the collaboration which is needed to achieve important health-related targets in the SDGs.
Read the statement from Helen Clark. Such a lot in one short statement, eh!? And such a shame that she did not make it to the Secretary General role. I think many countries were a bit afraid of her experience, her talent, and her ability to make change happen.