Eurordis - Rare Disease Europe

EURORDIS and the Japan Patients Association (JPA) signed a Memorandum of Understanding on 26 May 2013, bringing patient advocates from Europe and Japan together to promote rare diseases as an international health priority. The two organisations will share information on advocacy initiatives. They will also seek ways to increase understanding and communication between rare disease patient organisations and all people living with rare diseases in Europe and Japan.

 

“It’s a great pleasure and honor to sign this Memorandum of Understanding with EURORDIS and the JPA,” said JPA President Tateo Itoh. “We come together to improve the lives of patients affected by rare diseases living in Japan or Europe.” 

 

“We, at EURORDIS, very much value our relationship with JPA, which has grown since early 2012 around the International Conference on Rare Diseases,” added EURORDIS Chief Executive Officer Yann Le Cam. “This is an important new step in creating a global movement of rare disease patient organisations and in promoting the cause of people living with rare diseases internationally.”

 

JPA, a non-profit umbrella organisation established in 2005, focuses on rare and intractable diseases (“Nanbyo” in Japanese), and has approximately 300,000 members from 72 organisations. The JPA signed a Memorandum of Understanding with the US National Organization for Rare Disorders (NORD) in January 2013. 

 

EURORDIS signed a Memorandum of Understanding with NORD in 2009 and with the Canadian Organization of Rare Disorders (CORD) in 2012. This latest agreement between the JPA and EURORDIS reiterates the willingness of national umbrellas of rare disease patient organisations to collaborate globally in order to gain mutual benefits as much as to promote rare diseases as an international health policy priority.