The Voice of Rare Disease
Patients in Europe
New Partnerships for EURORDIS
EURORDIS has entered into two new partnerships with the Russian Patients' Union and the European Society of Human Genetics.
The Russian Patients' Union
The Russian Patients' Union (RPU) is a non-governmental organisation and the voice of approximately 20,000 patients in Russia, including those living with a rare disease. The main goal of the RPU is to ensure that patients, including rare disease patients, have rights to all necessary treatment. This agreement continues the strong existing collaboration between EURORDIS and the RPU, which has been in place since 2011 when RPU became a member of EURORDIS and the Council of National Alliances (CNA).
RPU and EURORDIS have agreed common objectives:
- To strengthen the common European and international voice of people living with a rare disease and address rare diseases as a common challenge, promote rare diseases as an international public health priority and develop worldwide actions, frameworks and rules; and
- To address the major expectations that patient communities have in common in Russia and EU, such as promoting rare disease research policy and funding, enabling earlier and better diagnosis of diseases, promoting equal access to the best standard of care and promoting the development/ availability of safe and effective drugs and treatments.
RPU and EURORDIS have agreed to enhance collaboration through: the continued participation of the RPU in the CNA and in Rare Disease Day; sharing of experiences relevant to the Russian national strategy on rare diseases; and participation in the development and activities of Rare Diseases International, among other activities.
The European Society of Human Genetics
The European Society of Human Genetics (ESHG) and EURORDIS entered into a new partnership at the recent annual ESHG Conference. Both organisations will work together to promote or develop awareness of rare genetic diseases, research for rare diseases and access to information.
The two organisations will align and support one another on a range of activities including conferences (such as the annual ESHG Conference and the European Conference on Rare Diseases & Orphan Products, the latter of which is organised by EURORDIS and partners), policy actions and initiatives of common interest.
Patient representatives have an increasingly present voice in all aspects of drug development including research. Although major advances have been made in raising awareness and increasing funding for rare disease research, important challenges remain in relation to best use of resources and how to coordinate efforts and improve policy. EURORDIS and other rare disease patient organisations are continually developing initiatives at the national and European level to promote research into rare diseases, from providing funding, to being directly involved in research projects.
EURORDIS is partner in a range of genetic research projects such as RD-Connect, an infrastructure project that links databases, registries and biobanks used in rare disease research into a central resource for researchers worldwide, and the Genetics Clinic of the Future Project, which aims to map the opportunities and challenges that surround the clinical implementation of new genome technologies.
Eva Bearryman, Junior Communications Manager, EURORDIS