EURORDIS-NORD

NORD  logoEURORDIS has sealed a Strategic Partnership agreement with the National Organization of Rare Disorders (NORD). This partnership will bring patient advocates from Europe and the US closer together and seek to promote rare diseases as an international public health priority. It will set the ground for key joint initiatives and increased transatlantic collaboration.

 

“This is groundbreaking news for rare disease patients all over the world who face many challenges in common that could be better addressed on an international basis,” says Yann Le Cam, CEO of EURORDIS. “NORD and EURORDIS are in a unique position to promote solidarity between Europe and the US and help bridge the gap between those regions of the world that have progressed more than others in their strategies to address the needs of people living with rare diseases. We can be key facilitators to promote the common interest of people with rare diseases and to empower patient advocates all over the world.”

 

The agreement spells out the common vision and objectives that the two organisations have identified in the last year. It is the culmination of a series of discussions between EURORDIS' CEO Yann Le Cam and NORD's President and CEO Peter Saltonstall. Both leaders and their Boards are convinced that rarity of patients, as well as the scarcity of expertise and of resources present a common public health challenge that should be tackled from a solid platform bringing together both sides of the Atlantic.

 

Yann le Cam“Raising awareness, sharing family experience on coping and caring for a child affected by a complex rare disease, creating patient communities or clusters for very rare or extremely rare diseases, promoting policies and support in favour of research on rare and genetic diseases, conducting clinical trials on very small patient populations, promoting better standard of diagnosis and care and easier access to cross-border care for patients affected by rare diseases are only a few examples of areas where it make sense to work at the international level,” argues Yann Le Cam.

 

To this end, both organisations have agreed to join forces to strengthen the common voice of people living with rare diseases, to promote rare diseases as an international public health priority, to enlarge outreach to more patient groups, and to expand networking and knowledge sharing.

 

During the next five years EURORDIS and NORD will further develop Rare Disease Day as an internationally-recognised event; establish common positions on key advocacy priorities; play a coordinated and pivotal role in the International Conferences for Rare Diseases and Orphan Drugs (ICORD) to help expand the movement of rare diseases; and collaborate in the development of international information and communication services that will take full advantage of web social media and networking possibilities. Both organisations will also support each other's fundraising efforts in key strategic areas.

 

Peter Saltonstall“The signing of this Memorandum of Understanding is the logical outcome of shared objectives and naturally converging strategies,” explains Yann Le Cam. “Since the US Orphan Drug Development Act and the EU Regulation on Orphan Drugs, we are indebted to leaders such as Abbey Meyers, Founding President of NORD, Marlene Haffner and Tim Coté at the FDA, and Steve Groft at the NIH, as well as to the rare disease community at large in the US. We have historical ties with the US and NORD in particular, and this Strategic Partnership comes as a big new step further.”

 

EURORDIS and NORD will mark the beginning of their collaboration with the launching of three new on-line patient communities and a rare disease public policy advocacy blog. Following the success of Rare Disease Day 2009, the two organisations will join forces for greater impact on Rare Disease Day 2010. Watch out for more bridge-building activities in the coming weeks and months!

For more information:
Read the article Working Together on both sides of the Atlantic

 


This article was first published in the October 2009 issue of the EURORDIS newsletter

 

Author: Paloma Tejada
Photo credits: © EURORDIS & NORD

 

Page created: 03/08/2010
Page last updated: 16/08/2011
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer 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