21st February 2019

Save the Date 

Rare Disease Day at the United Nations

Second High-Level Meeting of the NGO Committee for Rare Diseases

United Nations Headquarters, New York

The NGO Committee for Rare Diseases  Rare disease day

To mark the occasion of Rare Disease Day 2019 the NGO Committee for Rare Diseases,
with the sponsorship of the
Permanent Mission of Estonia to the United Nations,
is organising its second high-level meeting at the United Nations.

When: Thursday 21 February 2019, all-day event
Where: Conference Room 8, United Nations Headquarters, New York

Invitation with registration form and preliminary agenda to be circulated shortly (one person per organisation).
Please be aware that confirmation will be necessary in order to attend due to limited seat capacity. 

It will be possible to follow the event live online through webcast (link available in February).

Please email [email protected] with any questions.

Picture from our last meeting

The NGO Committee for Rare Diseases officially inaugurated on November 11th 2016 at the United Nations in
New York during its First High-Level Meeting: the ‘Global Gathering for Rare Diseases’, with the participation
of senior officials from the main UN agencies and bodies (WHO, UNICEF, UNDP, ECOSOC) and delegates from
a number of sponsoring countries. On that occasion, the link between the rare diseases community’s goals
and the UN SDGs 2030 Agenda was established and a call for the establishment of rare diseases as a global
public health priority within the UN system was issued.

With the suppport of

Ågrenska     EURORDIS     Rare diseases International

The second High Level Meeting is held in February 2019 in order to mark the occasion of Rare Disease Day – the annual observance held to raise awareness with policy makers and the general public – and aims to present a number of activities carried out through 2017 and 2018 within the human rights, health and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases.

The meeting will take the form of an all-day conference bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority.

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