With the 10th Rare Disease Day on 28 February 2017 reaching a truly global scale with events in over 90 countries, the global rare disease community wishes to celebrate another very significant date, 11 November 2016, which marked the official launch of the NGO Committee for Rare Diseases at the United Nations headquarters in New York.
The launch of the NGO Committee, a platform aiming to bring greater political recognition to the challenges of rare diseases at the global level, amply illustrated the relevance of rare diseases to the Sustainable Development Goals (SDGs) and the broader UN 2030 Agenda, but also amplified the clear call from all stakeholders in favour of taking global action on rare diseases.
An audience of 100 participants from patient organisations, United Nations agencies, civil society, academia and industry attended the event and more than 1,600 people followed it via the live-stream online. Important figures included:
Cyril Ritchie, President, Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)
Navid Hanif, Director, Office for ECOSOC Support & Coordination, UN Department of Economic & Social Affairs (DESA)
Nata Menabde, Executive Director of the World Health Organisation (WHO) Office at the United Nations
Daniela Bas, Director, Division for Social Policy & Development (DPSD), UN Department of Economic & Social Affairs (DESA)
Vidhya Ganesh, Deputy Director of Programme Division, UNICEF
This inaugural event was organised with the support of the Government of the Kingdom of Belgium, the Government of the Republic of France, the Government of the Republic of Malta, the Permanent Mission of Estonia to the United Nations and the Swedish Ministry of Health and Social Affairs, under the patronage of Queen Silvia of Sweden.
In addition, public figures such as former President of Finland Tarja Halonen, UN Under Secretary-General and former UNITAID Chairman Philippe Douste-Blazy, former UNESCO Director-General Federico Mayor Zaragoza, UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health Dainius Pūras, Independent Member of the UK House of Lords Baroness Jane Campbell and former Minister of State for Health of Hungary Miklós Szócska, amongst others.
Echoing the words said by Tenu Avafia of the UN Development Programme on the day, ‘the time for rare diseases is now’, and as the Committee moves into a new year, it will develop plans to reach its goal of integrating rare diseases within the agenda of the United Nations.
For further information on the next steps in the development of the Committee, please keep visiting www.ngocommitteerarediseases.org as our website will be continuously updated.
With our very best regards,
Yann Le Cam Anders Olauson
Chief Executive Officer, Chairman,
EURORDIS-Rare Diseases Europe Ågrenska
