Full acceptance speech of Yann Le Cam (Chief Executive Officer, EURORDIS) on the occasion of the presentation of the nonprofit Drug Information Association (DIA) President’s Award for Outstanding Achievement in World Health
Through you, Dr Su, President of DIA. I express our gratitude to each member of the DIA’s Board of Directors as well as to all members of the DIA worldwide.
It means a lot that the Drug Information Association (DIA) grants its most prestigious Award to a non-governmental organisation, a patient organisation, even more so in Europe and foremost for Rare Diseases.
It is a great honour for the European Organisation for Rare Diseases (EURORDIS / Rare Diseases Europe) and I am privileged to accept it on behalf of our 561 members in 51 countries as well as of our Volunteers and Staff.
Building on the USA’s pioneering action on Orphan Drugs, EURORDIS has forged the concept of Rare Diseases. This has allowed us to break the isolation of patients affected by severe life threatening diseases with limited hope of social recognition, care and cure, and to gather all patients affected by one of the over 6000 rare diseases into a critical mass of 30 million patients in Europe alone. These patients face the same issues of access to information, diagnostics appropriate care as well as the lack of knowledge of their diseases, the lack of research and lack of drug development. This strategy of joining forces has enabled us to turn Rare Diseases into a Public Health Priority, first in Europe, and thereafter Internationally.
Over the 15 years since it was created, EURORDIS has contributed to the adoption of several EU Regulations on Medicinal Products: the EU Regulation on Orphan Medicinal Products in 1999, EU Regulation on Paediatric Drugs in 2006, and the EU Regulation on Advanced Therapy Medicinal Products in 2007, as well as policy frameworks recognising Rare Diseases as a public priority: the EU Research Framework, the EU Health Programme, the EU Directive on Cross-Border Healthcare, the Commission Communication on Rare Diseases and the Council Recommendation on an Action in the field of Rare Diseases. Currently we are battling on the EU Regulation on Data Protection, the EU Regulation on Clinical Trials and the EU Directive on Transparency.
EURORDIS is a Civil Society organisation which stems from the HIV/AIDS activism, the knowledge advancement in genomics, the emergence of the World wide Web, the construction of the European Union, and the globalisation of our economy and social challenges.
What is probably unique about EURORDIS is that:
- We have created a robust pan-European movement of patient organisations and patient advocates which is multi-cultural and multilingual;
- We are professionals and enthusiasts in our strategy and ways of operation with the optimism to go beyond the problems affecting our lives;
- We don’t only advocate in public policy and build the capacities of a growing number of patient advocates, we also take responsibility in the implementation of the regulations and policies we have advocated through our active participation in the Scientific Committees and procedural processes of the European Medicines Agency and in different EU Expert Groups on Rare Diseases, Public Health, Research, and Medicinal Policy.
- We work through partnership with all stakeholders and we believe in value creation for all based on the principle of shared value.
EURORDIS has taken the leadership in turning Rare Diseases into an international movement, aiming to make it an International Public Health priority. We are doing this through:
- A Strategic Partnership with the US National Organization for Rare Diseases (NORD) and in close partnership with the Canadian Organization for Rare Diseases (CORD), the Russian Patients Union and the Japanese Patients Association;
- The Rare Disease Day, which was initiated in 2008 by EURORDIS and coordinated every year in partnership with our National Alliances for Rare Diseases in Europe and around the world, on the last day of February. This year, on 28th February 2013, over 70 countries from all continents participated ;
- A series of conferences at the national level, the continent level with the European Conference on Rare Diseases & Orphan Products and the US Conference on Rare Diseases & Orphan Products, and at the international level with the International Conferences on Rare Diseases & Orphan Drugs;
- The creation this year of an international movement called Rare Diseases International which is gathering National Alliances for Rare Diseases as well as International Federations for Rare Diseases – disease specific or for groups of diseases, in order to speak with one global voice on behalf of over a hundred million patients worldwide and to work with the UN system.
Over the course of this journey, DIA has been a companion and a partner.
I had the privilege to be among the first patient representatives to speak at the DIA EuroMeetings in the 1990s and the first to be a member of the DIA EuroMeeting Programme Committee, thereafter a Theme Leader and later a member of the DIA Advisory Council Europe.
All my efforts, with the support of EURORDIS colleagues Ariane Weinman and Maria Mavris, and DIA colleagues as well as the essential support of Dr Yves Juillet and other leaders in the DIA, were focused on increasing the participation of patient representatives in DIA activities, as a full stakeholder, a full actor of the drug development and regulatory processes, a partner in the value creation chain.
Over the years, we have been successful in increasing the number of patient advocates as Speakers in Sessions (12 to 15 every year), to promote them as Session Chairs, Theme Leaders, Programme Committee members. In addition, we initiated with the DIA, the DIA Patient Fellowship Programme which enables 40 patient representatives, based on an Expression of Interest and Selection, to be supported to attend the DIA EuroMeeting with registration fee waivers for all and even travel & accommodation covered for 20 of them. This programme is articulated with briefings, supporting networking activities, a well placed booth stand and an evaluation after each meeting. This programme has now been expanded to the USA at the Annual DIA Meeting. EURORDIS also has a partnership with DIA to organise the DIA Forum on Health Technology Assessment as well as on Orphan Drugs.
The DIA Philanthropy Programme has played a key role in supporting the EURORDIS Summer School for rare disease patient advocates in drug development, clinical trials and EU regulatory affairs.
More recently, EURORDIS has established a partnership with DIA which co-organised our European Conference on Rare Diseases & Orphan Products, starting with ECRD 2012 Brussels and continuing with ECRD 2014 Berlin, taking place on 8-10 May 2014. EURORDIS has also initiated a similar partnership between NORD and DIA for the US Conference on Rare Diseases & Orphan Products. This triangular partnership between EURORDIS, NORD and DIA is of mutual benefit and will offer a base for further expansion in other parts on the world.
I know what I have initiated, the strategies I have introduced and the doors I have opened but the achievements recognised with this DIA President’s Award for Outstanding Achievement in World Health belong to everyone who contributed with great team spirit inspired by common values and commitment!