As we celebrate the International Rare Disease Day 2012 we are turning rare diseases into an international movement as well as into an international public health priority. These are critical, unavoidable long term objective to sustain and boost national and regional dynamics as much as to enable global approaches when they are more relevant and efficient than national ones due to rarity.
One of EURORDIS aims – as stated in its Strategy 2010-2015 – and a main long term objective of the EURORDIS partnership with NORD are to support people living with rare diseases in becoming this international civil society movement speaking with one voice and gaining visibility as much as influence in international institutions.
The International Rare Disease Day, initiated in 2008 and organised by EURORDIS together with all national alliances and all stakeholders friends around the world, is a dynamic vector in achieving this objective. Rare Disease Day is a rapidly growing success reaching out to more countries – over 60 countries in 2012- and spreading the word thanks to local events, social media and viral communication. It is an essential campaign to raise public awareness, to attract attention of policy makers and a concrete common action to bear the sense of sharing common destiny and goals.
The International Conference on Rare Diseases & Orphan Drugs, of which I am one of the co-funding members, organized since 2005, first in Stockholm (2005), Madrid (2006), Brussels (2007), Washington (2008) and Rome (2009) are now moving to Buenos Aires (2010), Tokyo (2012) and soon Shanghai (2013) bringing together leaders from the patient advocacy organizations, public policy, academia and industry is a useful action to leverage the local efforts in gathering the relevant stakeholders and bringing the challenges of rare diseases to the surface. ICORD has also the potential to create a core international community of rare disease leaders sharing the same vision and common objectives.
The International Consortium for Rare Disease Research, initiated in 2010 by the European Union with the United States, Canada, Japan and other active countries and private players, is an essential initiative. The IRDiRC is now fully established since 2012 to promote globally coordinated policy for the development of the knowledge base for rare diseases as much as new diagnostic tools for most rare diseases and the ambitious objective of 200 new additional therapies for rare diseases by 2020. Following our advocacy, EURORDIS and other main national rare disease organisations are full members of IRDiRC Executive Committee.
The immediate use of OrphaCode, and tomorrow a possible WHO classification of rare diseases in the next ICD 11, is instrumental to shape international health information systems on rare diseases and enable new international collaboration. This OrphaCode is already widely and increasingly used around the world. These efforts are significantly supported by the European Union.
EURORDIS has initiated a Joint Declaration “Rare Diseases: an International Public Health Priority” currently reviewed and to be adopted in the coming year by umbrella rare disease patient organisations from around the world so to speak with one common patient voice to international institutions such as WHO and OECD, and take our future advocacy efforts at a new level.
EURORDIS will facilitate improved communication between these umbrella organisations in order to share information, exchange experience and coordinate limited international actions. Being itself an organisation covering 48 countries and working in seven languages, EURORDIS is better equipped to support these efforts and create the “Rare Disease International” network. This was discussed in January 2012 in Tokyo between EURORDIS for Europe, NORD for USA, CORD in Canada, NZORD in New Zealand, TZORD for Taiwan, Geizer for Argentina and the Japan Patients Association.
In parallel, EURORDIS and NORD will continue and grow their joint efforts to create International on line communities of patients and families, involving patient organizations from around the world when they exist, so to raise their disease awareness internationally, to ease exchange and mutual support across countries and continents, and to promote new patient generated knowledge.
This vision and step wise approach was presented by EURORDIS last month at the International Conference on Rare Diseases and Orphan Drugs (ICORD) in Tokyo, Japan, and welcomed by participants.
By dedicating a limited 1% or 2% of our respective resources to this international cooperation, we can make a huge difference to the hundred millions of patients living with a rare disease around the world while enhancing the effectiveness of our efforts in our respective remits.