LAUNCH OF A NEW CoNGO SUBSTANTIVE COMMITTEE
NGO Committee for Rare Diseases, New York – November 11, 2016
Keynote address by Cyril Ritchie, President of CoNGO
“The United Nations and Civil Society: CoNGO and CoNGO Committees”
It is a highpoint of CoNGO’s life in 2016 to mark today the launch of a new CoNGO Substantive Committee: The NGO COMMITTEE FOR RARE DISEASES.
I thank and congratulate all those in the Agrenska Foundation and in EURORDIS-Rare Diseases Europe for their initiative, enthusiasm, commitment and sheer hard work that has led up to this auspicious moment. It is of additional significance that the launch is taking place in United Nations Headquarters, under the high patronage of Her Majesty Queen Silvia of Sweden, with the active support and encouragement of several governments, and with engaged participation of a broad range of NGOs and CSOs. This moves me to place the event in the broader United Nations and Civil Society context.
Throughout the United Nations System, thousands of NGOs/CSOs have for decades had an increasingly interconnected relationship with different UN entities. The relationship may be consultative or informational; it may cover advocacy or operations; it may involve participation in UN Conferences and taskforces, or contractual field-service delivery, What is vital to underline is that the interlinkages between the worldwide NGO/CSO communities and the multifaceted United Nations structures are based on a wide range of shared values, shared ideals, and a common commitment to making the world a better place for future generations.
NGOs and CSOs are representative of the good causes they promote, defend and advance. Some agencies or bodies of the United Nations System could scarcely fulfill their mandates without being able to call upon – and rely upon – the competence, infrastructures and constituencies of NGos and CSOs. At UN policy-making levels, the experience-based and professional input from NGOs – based on field and community realities, and on frequently-intense analysis of the genuine needs and aspirations of populations – enhances the ultimate output from governments. These synergies work towards more realistic policy decisions, which themselves will have greater chance of being effectively implemented. This applies whether the topic is the protection of refugees, the achievement of gender equality, or the drafting of a Convention. Truly, the world needs a stronger UN, and stronger UN-NGO relationships.
For most of the United Nations history, the “Conference of NGOs in Consultative Relationship with the United Nations” – often shortened to “the Conference of UN NGOs”, and universally known as CoNGO – has been a principal interface between the world’s NGOs/CSOs and the entire UN System. CoNGO has become a depository of a vast sum of knowledge on the functioning of the United Nations System and uses its “insider” position to facilitate access, dialogue and enhanced interactions on the widest range of issues that are on the planet’s agenda – from the eradication of poverty to the empowerment of women; from environmental degradation to the integration of the disabled; from ageing to health to human rights to disarmament. These issues require planetary cooperation: NGOs and CSOs bring essential and fresh perspectives and insights to the negotiation tables and the drafting processes, and are key to then transforming words into action.
CoNGO’s 40 Substantive Committees are “front-line soldiers” in these processes. Each Committee brings together a community of knowldegeable NGO/CSO leaders, who in their own area devote their resources and energies to seeking solutions to one or more of the range of issues that figure every year on the United Nations General Assembly Agenda, or on the agendas of the Specialized Agencies, the ECOSOC Commissions, and other entities of the UN System. Each Substantive Committee focusses on the field its members know best, and brings input and advice – sometimes warning and criticism – to the relevant UN organ. While cooperating in a collegial way under the umbrella of CoNGO, each Substantive Committee takes the initiatives it judges appropriate to make progress towards a more just world.
I thus welcome the NGO Committee for Rare Diseases to the CoNGO family, to the UN circuit, and to the wider constituencies that will benefit from the work that you are about to inaugurate. I wish you well as you now move to contribute in your area of specialization towards creating that better world that we all desire.
Cyril Ritchie, President of CoNGO
MEDIA ALERT: Canadian Organization for Rare Disorders urges Ontario to implement Canada's first Rare Disease Strategy TORONTO, Feb. 27, 2017 /CNW/ - On International Rare Disease Day, patient representatives from the Canadian Organization for Rare Disorders (CORD) will meet with John Fraser, Parliamentary Assistant to the Minister of Health and Long-Term Care and other MPPs to share their experiences of living with rare disorders.
March 30, 2017
Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC
Date: March 30 - 31, 2017 Location: Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC REGISTER HERE Living Rare: With Research, Possibilities are Limitless With Patients, Anything Imaginable is Achievable! 2-Day Conference: March 30-31, 2017 OBJECTIVES Share experiences of living ... enhanced by a rare condition Connect with groups that improve rare living Create inspired and inspiring solutions within Canada’s Rare Disease Strategy Rare Disease Day 2017 UPDATED DRAFT AGENDA Through videos, testimonials, and facilitated discussions, we will provide an opportunity to get to know the people living with the rare conditions and their patient groups or organizations. Each of the four panels will be organized around one of the four core pillars of Canada’s Rare Disease strategy: diagnosis, expert care, community support, and access to therapy. The fifth pillar, research, will be integral to addressing issues identified in each of the other areas. REGISTER HERE Refund Policy: Cancellations received a minimum of 15 days prior to the event will receive a refund minus an administrative fee of $15.00. This fee covers the cost of processing the registration and refund. Cancellations received after the 15-day deadline and no-shows are non-refundable.