This is the official video for #RareDiseaseDay 2017! Research: With research, possibilities are limitless!
Rare Disease Day is a patient-led campaign that brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity – everyone can get involved!
The Rare Disease Day 2017 theme is research and slogan “With research, possibilities are limitless”. Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure or improved care. The tenth edition of Rare Disease Day will see people from all over the world come together to advocate for more research on rare diseases.
People living with a rare disease are sometimes unable to find answers and medical solutions they need, often because of a lack of research. To illustrate this frustration, this year’s video draws a parallel with a routine that many of us go through multiple times a day – searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response ‘your search had no results’.
Share the video to become part of the international campaign!
The NGO Committee for Rare Diseases brings together knowledge and experts to promote rare diseases as a priority in global health, research and social and medical care
Global Gathering for Rare Diseases:
Inaugurating the NGO Committee for Rare Diseases
The inauguration of the NGO Committee for Rare Diseases took place on 11 November at the United Nations Headquarters in New York.
This event took place under the patronage of:
Queen Silvia of Sweden
The Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)
With the support of:
– The Swedish Ministry of Health and Social Affairs
– The Permanent Mission of Estonia to the UN
– The Government of the Republic of Malta
Programme Speakers at a Glance Founding Act Report
Statements of Support for the NGO Committee for Rare Diseases
- Baroness Jane Campbell – Independent Member of the UK House of Lords
- Philippe Douste-Blazy – Under-Secretary-General of the UN, Special Adviser on Innovative Financing for Development in the United Nations, chairman of UNITAID and Former French Minister of Health (1993-1995 and 2004-2005)
- Miklós Szócska – Former Minister of State for Health of Hungary, Director of the Health Services Management Training Centre of the Budapest Semmelweis University
- Françoise Grossetête – Member of the European Parliament and Vice-Chair of the Group of the European People’s Party
- President Tarja Halonen – Former President of Finland and Co-Chair of the WHO-OHCHR High Level Working Group for the Health and Human Rights of Women, Children and Adolescents
- Dainius Puras – United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health
- Federico Mayor Zaragoza – President of the Foundation Culture of Peace and Former Director-General of UNESCO (1987 – 1999)
« Efficient and effective action for rare diseases depends on a coherent overall strategy for rare diseases mobilising scarce and scattered resources in an integrated and well recognized way, and integrated into a common effort »
The European Commission – 2008
« Rare disease policies require a global approach in addition to the national one. It is time for public authorities to consider rare diseases as a national as well as international public health priority »
Yann Le Cam (EURORDIS-Rare Diseases Europe) and Paloma Tejada (Rare Diseases International) – 2010
« Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including … medical care and necessary social services, and the right to security in the event [of] … sickness, disability, or other lack of livelihood in circumstances beyond his control »
The Yukiwariso Declaration – 2012
« Having a rare disease affects all aspects of life: experiences from thousands of families worldwide tell the same story. All areas of life – healthcare, social services, schools, insurances and labour – must work together. Life is holistic, and so must be the care and support. Working together at the United Nations will make this possible. »
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