A momentous day at the United Nations in New York – the Rare Disease Day Policy Event

On Thursday 21 February 2019, over 100 participants from the international NGO community, UN agencies, national governments, academic institutions, the private sector and the rare disease community came together at the United Nations (UN) in New York for the Rare Disease Day Policy Event (the Second High-Level Event of the NGO Committee for Rare Diseases).

Organised by Rare Diseases International, EURORDIS and Ågrenska and hosted by the Permanent Mission of Estonia to the UN, and co-hosted by an impressive 14 other Permanent Missions to the UN, the event was an opportunity to advocate for rare diseases to become a global health priority.

At the event, Yann Le Cam, Chief Executive Officer of EURORDIS, launched a call for rare diseases to be included in universal health coverage (UHC) and also called on UN Member States to support a UN resolution on rare diseases (read the press release). There was an overwhelming sense of support from Member States and UN and WHO speakers present. The NGO Committee will now be working to take next steps towards inclusion of rare diseases in the UN’s upcoming political declaration on UHC. You can watch a recording of the event and see photos and reporting of the event via the @ngorarediseases Twitter handle.

Patient leaders from around the world meet at 4th RDI Annual Meeting in Vienna

Agenda

List of participants

Photos

Presentations

Recordings

The 4th RDI Annual Meeting took place on May 10th in Vienna, Austria, back to back to the European Conference on Rare Diseases and Orphan Medicinal Products (ECRD 2018). Delegates from 33 member organisations attended the first part of the meeting, which was reserved to members only. One third of the member delegates came from outside Europe: from Argentina, Brazil, Colombia, USA, Canada and all the way from India, Iran, China, Japan, Singapore, Hong Kong and South Africa.

The Membership Meeting included an Extraordinary General Assembly called by the Council to approve the legal incorporation of RDI, as well as the 2017 Activity and Financial Report and the Action Plan and Budget for 2018. At the meeting, members present unanimously adopted the statutes of the new organisation and approved the Council’s decision to proceed with RDI’s legal incorporation, which will be completed before the end of the year. Zoe Alahouzou, Deputy to the CEO of EURORDIS, described the process towards legal and financial independence from EURORDIS, as well as EURORDIS continued support for the next 5 years (Read Press Release).

The rest of the morning was devoted to the presentation of various programs that merit attention from patient groups working at international level. Of particular interest was the Conference Programme to support national or regional conferences that include an international dimension, presented by Lisa Phelps, RDI Council Member from NORD. Also, the presentation of RDI’s new role in the International Rare Disease Research Consortium (IRDiRC), following the nomination of Council member, Ritu Jain, as the RDI representative in IRDIRC’s Constituency Assembly and Patient Advocates Constituency Committee.

The Membership Meeting was also the opportunity for members to hear and provide feedback on tools that could be of use in their advocacy work internationally. Sandra Courbier, Survey Programme Senior Manager at EURORDIS, presented Rare Barometer Voices and the benefits of extending the survey’s panel to patients internationally. Paloma Tejada, Director of RDI, presented the State of the Art of Rare Disease Activities in Europe (RD-ACTION) and tested the idea with members to extend it progressively to countries outside of the European Union.

The presentations were followed by a brainstorming session where patient representatives were able to talk about the different types of support that could be useful to them in their international work. All sorts of ideas ranging from travel grants, fellowships, training seminars, online educational modules, mentoring or twinning programs and advocacy tool kits were open for discussion.

The Membership Meeting ended with an open forum to enable members to present the situation in their own countries and voice their needs and opinions regarding RDI’s work.

Representatives of member organisations present, were also able to meet personally the three most recently-elected members of the Council: Angela Chaves from the Colombian Rare Disease Patient Alliance (FECOER), Ritu Jain of DEBRA International and Lisa Phelps of the National Organization for Rare Disorders (NORD)

In the afternoon, RDI members were joined by representatives from other patient groups, as well industry and other stakeholders of the rare disease community, for a two-hour session devoted to tools, means and actions to advocate for rare diseases in the United Nations system.

Ritu Jain, Council Member from DEBRA International, presented RDI’s Advocacy Committee, which was launched in September last year, as well as RDI’s Policy on developing, recommending and adopting policy positions.

Durhane Wong-Rieger, Council Chair from CORD, presented the role of RDI in the NGO Committee for Rare Diseases and its importance as a vehicle to influence policy at UN level as part of the Sustainable Development Goals.

At the end of the day, in a room packed with more than 100 people, Yann Le Cam, Council Member and CEO of EURORDIS, described the ongoing advocacy efforts by RDI to put rare diseases on the UN human rights, disability, development and global health agendas.

Participants took home the recent words from WHO’s Director General: “We are working for a world where no one is left behind. On #RareDiseaseDay, we welcome further discussions with the rare diseases community on how we can strengthen cooperation to ensure people with rare diseases can access the health services they need.”

Photos

Presentations

RDI Legal Incorporation – Zoe Alahouzou

Activity Report 2017 & Action Plan 2018 – Paloma Tejeda

Towards an RDI Conference Program – Lisa Phelps

International Rare Diseases Research Consortium (IRDiRC)

The Role of RDI in Supporting Rare Disease Patient Advocacy Organisation – Dr Ritu Jain

Rare Barometer Voices – Sandra Courbier

State of the Art of Rare Disease Activities: How to Collect and Benchmark Rare Disease Policy Information Beyond the EU – Paloma Tejada

RDI Advocacy Committee – Dr Ritu Jain

The NGO Committee for Rare Diseases – Durhane Wong

Advocating for Rare Diseases in the United Nations System – Yann Le Cam

Recordings

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

Paloma Tejada, Director of Rare Diseases International (RDI), 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 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) and the umbrella organisations that are members of the NGO Committee for Rare Diseases, including Ågrenska, EURORDIS-Rare Diseases Europe, International Alliance of Women, International Federation for Spina Bifida and Hydrocephalus and Rare Diseases International.

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.

The statement can be read here submitted by Thalassaemia International Federation under agenda item 11.7

Patient leaders from around the world meet at 3rd RDI Annual Meeting in Barcelona

 

Agenda

List of participants

Photos

Presentations

Recordings

 

 

 

The RDI Membership Meeting 2017 Barcelona (3rd Annual Meeting) was held on June 4th, 2017 in Castelldefels, Barcelona, Spain. Over 50 participants from 23 countries were able to network with patient advocates from around the world, learn more about recent developments in international rare disease advocacy and receive information to become further involved in RDI activities.

The first part of the meeting was reserved for members only. The objective was to inform members of the activities undertaken by the Alliance in 2016 as well as the Work Plan and Budget for 2017. This was also the ideal moment to discuss with them outreach and recruitment plans to give more visibility to RDI and attract additional members to the Alliance, which counts 47 members to date. Representatives of member organisations present, were also able to meet personally the two most recently-elected members of the Council: Ritu Jain, President of DEBRA Singapore and Board Member of DEBRA International and Kin Ping Tsang nominated by RETINA International and President of the Hong Kong Alliance for Rare Diseases.

The second part of the meeting was open to all umbrella patient groups and other stakeholders interested in working in the field of rare diseases at the international level. Participants received information about the latest advocacy actions community to put rare diseases in the global health and development agenda. In particular, feedback from the first Rare Disease Policy Event in Geneva in February and the launch of the NGO Committee for Rare Diseases at the United Nations in New York last November. At the meeting, participants were also able to discuss ways in which they could contribute to these efforts through their Ministries of Health and Foreign Affairs or through their Permanent Representations to the UN in New York or Geneva. This session was also the ideal opportunity to further understanding of the UN system and the synergies between rare diseases and the Sustainable Development Goals 2030 Agenda with its mission to ‘leave no one behind’.  The session also included information about the different types of UN Resolutions and strategies to obtain a UN Resolution on Rare Diseases.

The broader UN perspective was followed by an environmental scan of rare disease policy at the national and regional levels. 12 patient leaders from Asia (India, Iran, Hong Kong, Malaysia and Singapore); Latin America (Colombia, Mexico and the Iberoamerican Alliance for Rare Diseases); Africa (South Africa), North America and Europe (USA, Canada and Spain) gave an overview of rare disease policy, trends and challenges in their region of the world.

The country panels were introduced by a presentation of the Report on the State of the Art of Rare Disease Activities in Europe (RD –ACTION) by Victoria Hedley of Newcastle University. The presentation triggered a discussion on the importance of data collection at country level and the development of a pilot project to include non-EU countries in this survey.

The final part of the meeting was intended to highlight examples of the advocacy work of RDI members in order to gauge the advocacy priorities for the rare disease patient community at the international level. Presentations included the advocacy work that has been undertaken by the World Federation for Hemophilia, the International Niemann-Pick Disease Alliance, the BLACKSWAN Foundation and the rare disease national alliances of Argentina and Colombia.

Group of RDI Membership Meeting participants standing in front of screen 15 RDI fellows from India, Malaysia, South Africa and 6 Latin American countries, stayed on to attend the ExPRESS 2017 Expert Patient and Researcher EURORDIS Summer School (English and Spanish versions) that took place in Barcelona the week following the RDI annual meeting (June 5-9, 2017).

 

 

 

Presentations

Global Environment: Advances and Opportunities

  • RDI Joint Declaration:  Rare Diseases: An International Public Health Priority – Lisa Phelps, Secretary of the Council of Rare Diseases International and Director of Marketing and Community Relations, National Organization for Rare Disorders 
  • Understanding the UN system and UN SDGs 2030 – Clara Hervás, Public Affairs Junior Manager, EURORDIS-Rare Diseases Europe
  • NGO Committee for Rare Diseases, New York – Yann Le Cam, Chief Executive Officer of EURORDIS – Rare Diseases Europe and Member of the Council of Rare Diseases International
  • RDI Rare Disease Day Policy Event Geneva – Paloma Tejada, Senior Manager, Rare Diseases International
  • A United Nations General Assembly Resolution: an introduction to the concept – Clara Hervás
  • Strategy towards a UN Resolution on rare diseases – Yann Le Cam

Review of 11 National Policies for Rare Diseases in the Context of Key Patient Needs, Safiyya Dharssi, Director – International Public Affairs, Rare Disease & Inflammation/Immunology, Pfizer Inc

Presentation of the Report on the State of the Art of Rare Disease Activities in Europe, and pilot project to extend beyond the European Union, Victoria Hedley, RD ACTION, Newcastle University, UK

Environmental Scan of Rare Diseases Around the World: Advances and opportunities

Rare Diseases South Africa

Federacion Colombiana de Enfermedades Raras

Alianza Iberoamericana de Enfermedades Raras (ALIBER)

Federación Mexicana de Enfermedades Raras (FEMEXER)

Advocacy Opportunities: Where and How Do We Go Forward?

Building on Grassroots successes and initiatives

Christoph Poincilit, International Niemann-Pick Disease Alliance (INPDA)

Chiara Ciriminna, BLACKWSAN Foundation

Mark Brooker, World Federation of Hemophilia (WHF)

Angela Chaves Restrepo, Federación Colombiana de Enfermedades Raras (FECOER)

 

Recordings

11:00-13:00 

  • Global Environment: Advances and Opportunities
  • Review of 11 national policies for rare diseases in the context of key patient
    needs
  • Presentation of the Report on the State of the Art of Rare Disease Activities in
    Europe

 

14:00-16:00 

  • Environmental Scan of Rare Diseases Around the World: Advances and
    opportunities

 


16:30-19:00 

  • Advocacy Opportunities: Where and How Do We Go Forward?
  • Rare Connect and RDI

 

The right to health – making rare diseases a global health priority

#rdiGeneva

 

10 February 2017, Geneva – A-first-of-its-kind event took place in Geneva which brought together international experts in the fields of public health, human rights, scientific research, patient advocacy and the health industry to discuss why and how rare diseases should be part of the global health agenda.

Almost 150 participants at the Rare Diseases International policy event ‘The Right to Health: The Rare Disease Perspective’ explored ways to address inequality and improve access to health for the estimated 300 million people living with a rare disease around the world.

The event was livestreamed on Twitter via @rarediseasesint and #rdiGeneva.

Held to mark the occasion of Rare Disease Day 2017, the event was organised by Rare Diseases International and in partnership with the BLACKSWAN Foundation and EURORDIS-Rare Diseases Europe.

It focused on the crucial role international collaboration plays in promoting rare diseases as a global public health and research priority, in line with the spirit of the United Nations’ 2030 Sustainable Development Agenda of ‘leaving no one behind’.

Participants discussed how this international cooperation is vital to incentivise research and innovation, to increase access to diagnostics, medicines and treatments, and to ensure rare diseases are integrated into Sustainable Development Goal (SDG) number three to ‘ensure healthy lives and promote well-being for all at all ages’.

The event was organised in the wake of the third International Rare Disease Research Consortium (IRDiRC) Conference in Paris.

The discussions built on the IRDiRC goals, as well as the 2030 Sustainable Development Agenda, the conclusions of the UN High-Level Panel on Access to Medicines, a statement made by Administrator of the UN Development Programme Helen Clark, and the work of the recently launched NGO Committee for Rare Diseases, which is committed to catalysing all efforts towards the delivery of the UN SDGs in support of rare diseases.

Key speakers at the event included:

  • Christopher P. Austin, Chair, International Rare Disease Research Consortium (IRDiRC), National Institutes of Health, USA
  • Peter Beyer, Senior Advisor, Public Health, Innovation and Intellectual Property, Department of Essential Medicines and Health Products, World Health Organization
  • Ruth Dreifuss, Co-Chair of the United Nations Secretary General’s High-level Panel on Access to Medicines, former President of the Swiss Confederation
  • Dainius Pūras, United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Office of the UN High Commissioner for Human Rights
  • Maria Luisa Silva, Director of UN Development Program (UNDP) Office in Geneva

Patient representatives from around the world also participated to illustrate the importance of patient input in efforts to make rare diseases a global health priority:

The event was initiated by patients through Rare Diseases International, under the patronage of the Federal Councillor Alain Berset, Head of the Swiss Federal Department of Home Affairs, and with the participation of the International Rare Diseases Research Consortium, the NGO Committee for Rare Diseases, Orphanet and ProRaris.

It took place in Geneva, the main hub of global health governance, which hosts the United Nations and the headquarters of the World Health Organization.

To read more about the event, to watch recordings of the live-stream and to view all of the supporting documents, please visit here.

Solidarity with Iranian patients

EURORDIS Partnership with RADOIR

EURORDIS-Rare Diseases Europe has recently signed an agreement with the Rare Disease Foundation of Iran, a non-profit and non-governmental institution that provides services for rare disease patients and their community in Iran.

Created in 2008, RADOIR was established by an entrepreneur, M. Ali Davoudian, and medical professionals who care for patients with rare disorders. The foundation aims to improve the quality of life for patients living with a rare disease and to increase public awareness about the burden of rare diseases on patients, their families and the community.

  • RADOIR encourages the creation of national disease specific associations by providing financial support, mentoring and facilitating their interaction with competent authorities.
  • RADOIR has also opened several care centres in Iran which provide medical imaging services. They also help the patients to cope with their administrative situations and offer a permanent international helpline in Farsi, with twelve members of staff working 24/7. All services are offered free of charge for all patients suffering from rare diseases and cancers. RADOIR also covers basic health insurance costs for patients who are unable to afford it alone.
  • RADOIR has been organising events in Tehran for Rare Disease Day since 2010, gathering patients, health professionals and authorities, as well as holding conferences with more than 1000 participants.

EURORDIS and RADOIR share the common vision that bringing together rare disease patient communities from around the world catalyses international collaboration of all stakeholders. They recently signed a Memorandum of Understanding, which is part of the continued effort to stress the international dimension of the rare disease movement and the global benefits to be gained by international collaboration in this field. Read more about EURORDIS international partnerships.

RDI and RADOIR

RADOIR also became a member of RDI at the end of October, right in time for the launch of the NGO Committee for Rare Diseases, where they intend to play a role due to having consultative status with the United Nations Economic and Social Council.

Solidarity with the Middle East regarding the interests of rare disease patients is required to leverage the efforts of those fighting to promote the cause of rare diseases in the region.

Rare Diseases Conference 2016 featuring the 11th ICORD Annual Meeting

Rare Diseases Conference 2016 featuring the 11th ICORD Annual Meeting

The purpose of the Rare Diseases Conference that took place in South Africa last month was to provide a global forum for all stakeholders within the rare diseases field to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs. Incorporating the annual International Conference on Rare Diseases and Orphan Drugs (ICORD) for 2016, RareX had an extended programme, to incorporate patients, their families and caregivers as well as support groups and minority groups within the rare disease community.

The conference included presentations from members of rare disease organisations all around the world, including the Canadian Organisation for Rare Diseases (CORD), the New Zealand Organisation for Rare Disorders (NZORD) and the International Rare Diseases Research Consortium (IRDiRC). Presentations were given on global rare disease policy, diagnostics, congenital malformation, access to treatment, research and patient organisations.

Also during the conference, the African Alliance for Rare Diseases was launched, with its future patient charter being developed on-site. The African Alliance aims to be a common voice to advocate and address the lack of prevention, delayed diagnosis and lack of reliable diagnostics resulting in diminished access to treatment and supportive care for rare disease patients in Africa. The conference proved to be very useful in forwarding the rare disease agenda in South Africa and across the African continent and will hopefully be just the start of rare disease dialogue in Africa.

Statement from UNDP Administrator Helen Clark to the ICORD Meeting

ICORD is very pleased to announce this statement on rare diseases and the development agenda, presented by Helen Clark, Administrator of the United Nations Development Programme, to the ICORD conference in Cape Town, South Africa, on 20 October 2016. It is very significant as the first official statement from such a high level in global health and development affairs, about the needs of rare diseases.

 

Good morning, I send warm greetings to everyone gathered in Cape Town for the 11th ICORD meeting, the International Conference on Rare Diseases and Orphan Drugs. You are gathered over the next three days to discuss a matter of great importance to both health and international development communities. More than 300 million people around the world live with at least one rare disease. In most cases the nearly 7000 diseases which are classified as rare do not constitute a large enough market to incentivize much needed medical innovation. Where treatments do exist, they are often expensive, and place economic strain on individual patients and their families, as well as on health systems. Numerous studies from around the world, including studies by UNDP, show that ill health and the costs associated with it are major factors which push people into poverty. Thus the topic of this ICORD conference is as relevant to development practitioners as it is to health professionals.

There are many opportunities to address the specific issues faced by people living with rare diseases. Allow me to highlight three of these:

  • The first is the 2030 Agenda for Sustainable Development which was adopted by UN Member States last year. At the heart of this new agenda and the seventeen Sustainable Development Goals which accompany it is a fundamental principle: “to leave no one behind”. The hard work has begun to transform this bold development agenda from words into actions at all levels – national, regional, and local – which will improve the lives and well-being of all. The 2030 Agenda is complex, and there is much to do, including on health. One of the key commitments under Goal 3, “ensuring healthy lives 2 for all”, is to achieve universal health coverage and provide “access to safe, effective, quality, and affordable essential medicines and vaccines for all”. The research on and development of health technologies is an important element of universal health coverage. No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.
  • Second, the Report of the Secretary-General’s High-Level Panel on Access to Medicines was released last month. The report concluded that greater investments are required from governments to address the absence of adequate market incentives for unmet health needs such as rare diseases. UNDP is working closely with several governments to strengthen their legal and regulatory environments on health technology innovation and access. We welcome the opportunity to work more closely with ICORD in this regard.
  • Third, sustainable development requires whole of government and society responses. Often the key obstacles to achieving an important goal will be outside the immediate sector targeted for attention. The several health-related targets outlined across the SDGs should serve as a reminder of how governments, civil society and patient groups, and industry and development partners can work together to increase access to health technologies within a relatively short time-frame. ICORD, as a multi-stakeholder society of patients, health professionals, researchers, regulators, health officials, and pharmaceutical industry representatives, offers a model of the collaboration which is needed to help achieve these important targets.

On behalf of UNDP, I wish you a productive and successful event at ICORD 2016, and thank you in advance for the work you will do in the coming days and years. Let us continue working toward inclusive and sustainable development for all, including for those with rare diseases.

2nd Annual RDI Membership Meeting held in Edinburgh

RDI members gathered at the annual Membership Meeting in Edinburgh.

RDI’s Annual Meeting was held on May 25th, 2016 – the day before and in the same premises as the European Conference on Rare Diseases & Orphan Products (ECRD 2016) in Edinburgh, Scotland.

At only the second annual RDI meeting following the launch meeting in May 2015, over 80 participants focused on: progress in RDI activity made so far; how to advocate for rare diseases to become an international public health priority; how international rare disease stakeholders can join forces to do this and also next steps and strategic priorities for RDI.

The event was also an opportunity for RDI members and those patient groups potentially interested in joining, to meet and discuss the advocacy agenda of the global alliance.

At the meeting, the new members of the Council introduced themselves and the actions planned. Yann Le Cam, Chief Executive Officer of EURORDIS and member of the recently elected RDI Council, presented a draft action plan for the next 3 years, which is open for consultation via the RareConnect RDI Discussion Group.

Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders and member of the RDI Council, opened the meeting by saying: “There has been great improvement over the last two decades, now when you mention rare diseases people know what you are talking about. Now our role is to ensure rare diseases are explicitly recognised as part of universal health coverage. RDI will create tremendous opportunities in the near future. Right now we all need to work together; we need to take a leap of faith to make RDI a success, to bring together the global rare disease community and to ensure rare diseases are recognised as a public health priority.”

She also spoke of the difference between rare disease communities and actions in developed and developing countries, “Not everybody is moving at same pace – we need to move as a global rare disease community to prevent widening this gap.”

The RDI meeting included presentations from Alain Baumann of the World Federation of Hemophilia,  who shared their model on sustainable national care programs in developing countries; John Forman, the President of the International Conference on Rare Diseases and Orphan Drugs (ICORD), with which RDI is collaborating on international conference activity; Emmanuel Chantelot, Chair of the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA) Rare Disease working group; and Dr Iiro Eerola, who presented the International Rare Diseases Research Consortium.

Anders Olauson, Founder and Chairman of the AGRENSKA Foundation, also introduced the new NGO Committee for Rare Diseases, in which RDI will represent people living with a rare disease. The inaugural meeting for this Committee, which was established under the umbrella of the Conference of NGOs with Consultative Status to the United Nations Economic and Social Council (CoNGO), will take place in November 2016.

Rare Diseases International annual meeting May 2016: Presentations

Agenda

List of Participants

Rare Diseases International launched at inaugural members’ meeting

The first annual meeting of RDI took place in May 28, 2015 in Madrid, Spain, alongside the EURORDIS Membership Meeting.

Rare Diseases International Membership Meeting Madrid 2015

Over 60 patient representatives from 30 countries gathered for the official launch and inaugural meeting and to adopt the principles of a Joint Declaration aimed at advocating for rare diseases to be an international public health priority.

The Rare Diseases International Pre-formation GroupYann Le Cam, EURORDIS Chief Executive Officer, said at the launch, “The foundation of RDI is a historic moment, turning the rare disease patient movement into an international one. By coming together we are creating a critical mass that cannot be ignored. Joining together makes each of us stronger locally and together globally.”

He emphasised that globalisation is not a challenge for the rare disease community but part of the solution, commenting, “The complexity of the rare disease community can be united through RDI. Rare diseases are currently ignored on the international agenda. There is a long way to go, but we must look at our diversity as a strength, not a problem.”

Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD) added, “CORD has benefitted tremendously from its EURORDIS membership and RDI will be an even greater resource, especially for patient groups in countries that are just developing rare disease policies, by allowing them to draw upon best practices, support and a global patient voice.”

Peter L. Saltonstall, President and CEO of the US National Organization for Rare Disorders (NORD), said, “NORD is pleased to join Rare Diseases International and to collaborate with leading patient advocacy groups from around the world to help make rare diseases an important global public health priority.”

Photos of the launch on flickr

Presentations



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