Thursday 21st February 2019

NGO Committee for Rare Diseases calls for a UN resolution on rare diseases

United Nations Headquarters, New York

During this year’s Rare Disease Day 2019 Policy Event, held at the United Nations Headquarters in New York on Thursday 21st February, the NGO Committee for Rare Diseases launched a call for:

– The integration of rare diseases into the upcoming landmark UN political
declaration on universal health coverage (UHC), and
– A UN resolution on rare diseases.

Watch the event here 

Organised by the NGO Committee co-founders (Ågrenska and EURORDIS-Rare Diseases Europe) and Rare Diseases International, this was the second high-level event of the NGO Committee for Rare Diseases and took place to mark the occasion of Rare Disease Day 2019 (28 February).

The event was held under the patronage of HRH The Grand Duchess of
Luxembourg, hosted by the Permanent Mission of Estonia to the United Nations and co-hosted by 14 Permanent Missions from: Belgium, Brazil, Cyprus, France, Japan, Kuwait, Luxembourg,  Malta, Romania, Serbia, Spain, Sweden, Thailand, and the United Arab Emirates.

Anders Olauson, Chair of the NGO Committee and Chairman of Ågrenska (Sweden), said, “We must ensure that the rights of people living with a rare disease are respected and that we are not discriminated against because patient population numbers seem small for each rare disease. In total, there are 6,700 rare diseases forming a community of over 300 million people.”

Yann Le Cam, Chief Executive Officer of EURORDIS, stated, “Today is a crucial step towards the integration of rare diseases into the upcoming UN political declaration on UHC and towards our end goal of a UN resolution on rare diseases. We call on the UN to adopt a resolution at the General Assembly that will formally make rare diseases a global priority, setting in motion a wave of policy actions that will ultimately improve the lives of the over 300 million people affected by rare diseases around the world, and in turn contributing to the achievement of the Sustainable Development Goals and the ambition to leave no one behind.”

Discussions at the event focusing on the need to integrate rare diseases into the upcoming landmark UN political declaration on UHC, due to be adopted at the first ever UN High-Level Meeting on UHC during the UN General Assembly in September 2019. To this end, the NGO Committee is supporting a new position paper from Rare Diseases International that will serve to meet this objective.

Speakers at the event included, among many others:
– Mr Andrew Gilmour, Assistant Secretary-General for Human Rights and Head of the Office of the High Commissioner for Human Rights in New York
– Dr. Nata Menabde, World Health Organization NYC Office Director
– Dr. Ruediger Krech, Director, Universal Health Coverage and Health Systems, World Health Organization
– Mr Martin Seychell, Deputy Director-General for Health and Food Safety, DG SANTE, European Commission
– Dr. Irene Norstedt, Acting Director responsible for the Health Directorate
within the Directorate-General for Research and Innovation, European
Commission and Head of Unit, Innovative and Personalised Medicine Unit
– Mr Anders Nordström, Ambassador Global Health, Swedish Ministry of
Foreign Affairs.

Ambassadors and officials from the Permanent Missions to the UN of Brazil, Estonia, France, Japan, Kuwait, Romania, Spain, Thailand, and the United Arab Emirates also gave official statements during the event.


Monday 15th October 2018

UN Special Rapporteur calls for support of rare disease community in report to UN General Assembly

In her report, presented to the Third Committee of the General Assembly of the United Nations (UN) on Monday 15th October 2018, Catalina Devandas, the UN Special Rapporteur on the rights of persons with disabilities, brings to the attention of the 73rd session of the General Assembly of the UN, that a “lack of accurate diagnosis and effective treatments for the majority of rare diseases represents a challenge worldwide”.

She also calls on states to “consider developing and implementing policies and practices targeting the most marginalized groups of persons with disabilities”, including rare diseases.

The mention to rare diseases in this report follows advocacy efforts from the NGO Committee of Rare Diseases including a contribution made to the report ahead of its publication.

In addition, representatives of the rare disease community were present at an Expert Group Meeting on the right of persons with disabilities to the highest attainable standard of physical and mental health in Geneva, Switzerland on 15-16 May 2018 hosted by the UN Special Rapporteur herself; as well as at the Conference of State Parties to the Convention on the Rights of Persons with Disabilities (CRPD) in New York, US on 12-14 June 2018 where an oral statement was issued in the name of the NGO Committee for Rare Diseases.



25 June 2018 

Human Rights of People living with a Rare Disease highlighted in Official Statement at Human Rights Council

As NGOs with ECOSOC Consultative Status, Thalassaemia International Federation, the Agrenska Foundation, and the International Federation for Hydrocephalus and Spina Bifida – IF, submitted a statement to the 38th Session of the Human Rights Council (18 June – 6 July, Geneva) endorsing the messages laid out in the NGO Committee for Rare Diseases publication ‘The ‘Right to Health’ in Rare Diseases’.

The Official Written Statement reinstated how several of the challenges faced by persons with rare diseases intersect the main pillars of the “right to health” framework including Accessibility, Availability, Participation and Good Quality, meaning that rare diseases must be addressed as both a human rights and public health issue.

As a reminder, the ‘The ‘Right to Health’ in Rare Diseases’ was a contribution made by the NGO Committee for Rare Diseases in the context of the open consultation by the Office of the High Commissioner for Human Rights (OHCHR) for the “Report on the contributions of the right to health framework to the effective implementation and achievement of the health-related Sustainable Development Goals”. This report, which highlights the need to attend to the rights of “persons with disabilities and other populations and groups in vulnerable situations”, was presented by Ms. Kate Gilmore, UN Deputy High Commissioner for Human Rights, at the 38th Session of the Human Rights Council. The OHCHR received a high number of contributions to it, including the one on rare diseases, which can be found here.

Official Statement on rare diseases at United Nations Human Rights Council


13 June 2018

NGO Committee for Rare Diseases delivers an oral statement at the United Nations Conference on Disability

On behalf of the NGO Committee for Rare Diseases, Clara Hervás, Public Affairs Junior Manager, EURORDIS-Rare Diseases Europe, delivered a statement at the Conference of State Parties to the Convention on the Rights of Persons with Disabilities at the United Nations (UN) in New York on Wednesday 13th June.

This conference, which is an annual gathering of stakeholders and signatory Member States, took place from 12 to 14 June at the UN Headquarters in New York under the overarching theme: ‘Leaving no one behind through the full implementation of the CRPD’.

The NGO Committee for Rare Diseases was among the few civil society representatives allowed to make a statement during the General Debate of the Conference. The statement called for the UN to ‘pay attention to the diversity within the community of people living with disability and ensure that people living with a rare disease across all regions of the world are not in fact left behind’ in the implementation of the Convention on the Rights of Persons with Disabilities.


22 May 2018

Rare diseases mentioned for the first time at WHO 71st World Health Assembly

Paloma Tejada, Director of Rare Diseases International (RDI), member organisation of the NGO Committee, delivered an official statement at the World Health Assembly of the World Health Organisation (WHO) in Geneva (Monday 21 to Friday 26 May). The statement is the product of a joint collaboration between the umbrella organisations that are members of the NGO Committee for Rare Diseases and a number of organisations holding the status of ‘special relations with the WHO’ (Thalassaemia International Federation, World Federation of Hemophilia, International Alliance of Patients’ Organizations and March of Dimes).

The statement is anchored to agenda item ‘11.7 Preparation for the third High-level Meeting of the General Assembly on the Prevention and Control of Non-communicable Diseases, to be held in 2018’. It calls on Member States to “not leave behind significant but often neglected rare diseases, each of which affect relatively small numbers of patients but collectively affect at least 300 million people globally”. Key messages of the statement include: to ACKNOWLEDGE the severity of the problem; to PROMOTE national strategies; to ADVOCATE for available and affordable medicines; and to DEVELOP synergies across borders.

Full article and video of the statement