Historic launch of the UN NGO Committee for Rare Diseases at the UN New York
New York witnessed a rare event on 11 November 2016. After decades of hard work, the rare diseases patient-voice final reached the ears of the United Nations and the world. The UN Headquarters on 405 East 42nd Street saw the launch of the NGO Committee for Rare Diseases (NGOCRD)
The NGOCRD is a committee formed under the umbrella of Conference of NGOs in Consultative Relationship with United Nations (CoNGO).
NGOCRD creates a community of practice and an advocacy group that will pool together their knowledge and expertise to progress towards greater recognition of rare diseases as a global priority in the fields of health policy, research and social and medical care. The goal of NGOCRD is to bring visibility and understanding of rare diseases to the United Nations.
The inauguration event, streamed live, billed as the ‘Global Gathering for Rare Diseases’ had the patronage of Queen Silvia of Sweden and the Chair of CoNGO, as well as the support of several national governments.
The event saw one of the largest participation of the international rare disease patient community from around the world representing international rare disease federations from Australia, Burkina Faso and Guinea, Canada, China, Denmark, France, Iran, Ireland, Japan, Malaysia, New Zealand, Russia, Sweden, Taiwan, the US and Venezuela.
IAPO was represented by its current board member Migdalia Denis from Venezuela and ex-board member Durhane Wong-Reiger from Canada. Both spoke passionately about their advocacy work.
It was interesting to note the diversity and the various stages of development of the advocacy groups present. Firstly, at the bottom of the ladder, came the groups that were just trying to get a right name for their ‘ailment’ recognized globally. Their policy instrument was the nomenclature and WHO ICD 10 disease classification. What do they use as a name? Do they use the main symptom, syndromes or the disorders to name the disease, or do the use the name of the discoverer or something ‘Latin/Greek’ to name the disease?
Getting the nomenclature right is important as the name then becomes the ‘search term’ that the Google algorithm can pick out from all the research published on that disease. This then helps patients to search out information they need to manage their diseases. The right name also helps researchers, like Cochrane Group, who can use this name to conduct meta-data analysis to help clinicians produce treatment guidelines and policy makers to produce protocols and regulations. There then came groups who wanted to use patient registers as policy change instruments. If you are not counted, you do not count! Patient registries help policy makers and 'reimbursement schemes' to plan health care expenditure. The right disease name also matters as it avoids stigmatization as we covered in our previous newsletter on WHO guidelines. A rose by any other name.
Then there were other groups who were highly sophisticated and effective advocates. Their policy instrument of change was health legislation. Sharing their successes with all, advocates from Chile told the gathering how they led a textbook advocacy campaign to get onto the statute book a national legislation guaranteeing the health care needs of patients with rare diseases: The Ricarte Soto Law.
NGOCRD is now going for the gold medal in policy change instruments! Their target policy instruments will be a UN Resolution and Declaration on rare diseases, like the None-Communicable Diseases Declaration, that could change the lives of millions globally at one-stroke. They later aim for a 'diamond' medal and to target the big three (UN, WHO, World Bank) for an international treaty on rare disease. Judging from the passion and energy, NGOCRD may just surprise us all by getting it!
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