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 voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases