Tuesday, April 30, 2013

RareConnect announces 40th online community

RareConnect announces 40th online community

RareConnect.org, the platform created, monitored and run by patient organisations EURORDIS and NORD, continues its mission of bringing rare disease patients together, across borders and beyond language barriers

Paris, 30 April, 2013 – RareConnect.org, a flourishing rare disease online network that brings together thousands of frequently isolated patients, families and patient groups, from across the globe, celebrates the launch of its 40th community. Each of RareConnect’s disease specific communities is monitored, offering a safe place for exchange. Information and comments are translated into five languages, allowing users to communicate with each other despite language differences.
This 40th RareConnect community offers those caring for patients with rare undiagnosed brain diseases a place to come together and connect. The community was created in collaboration with several patient support groups including the Wilhelm Foundation,SWAN UK, and SWAN USA.
Commenting on the launch of the new community, Wilhelm Foundation founder Helene Cederroth said, “This community represents an enormous step forward to better understanding undiagnosed brain diseases. It is a big opportunity for the community to make its voice heard and hopefully it will encourage specialists from all over the world to participate so that one day we hope it can lead to diagnoses.”
RareConnect launched in 2009 as part of the strategic partnership between the world’s two most established rare disease patient organisations, EURORDIS (European Organisation for Rare Diseases) and NORD (National Organization for Rare Disorders). The platform provides a safe, moderated online social network where individuals affected by rare diseases can connect with others, share common experiences and find helpful information and resources.
Organised into 40 disease specific communities, the network now counts more than 4,300 members and involves over 300 patient associations in the governance and growth of the 40 communities. Three full-time community managers support the moderators, animate and promote the project. Volunteer moderators from many of the member groups take an active role in their respective communities.
Available in five languages (English, French, German, Italian and Spanish) RareConnect is unique in that it offers a human translation service to patients who need to exchange valued experiences and information with members from different countries, speaking different languages. This service available free-of-charge allows discussions, articles and patient stories to be shared and understood across the five main European languages, permitting people to learn how others are coping with their rare diseases in different countries.
EURORDIS Chief Executive Officer Yann Le Cam said, “RareConnect brings together rare disease patients in a collaborative way, across borders. Its rapid success is beyond our expectations. Watching it expand and taken to the hearts of hundreds of patient groups as a safe place they can call their own is our inspiration.”
RareConnect stands apart from other rare disease networks by not carrying advertising or sharing data with any third parties. It hosts thriving communities that include rare conditions such as Dravet syndrome, Multiple System Atrophy, and Behcet's disease. Visit the RareConnect website for a full list of the current rare disease communities.
RareConnect project leader at EURORDIS, Denis Costello, said, “We developed RareConnect in response to the need of rare disease patients to connect with each other and to have access to reliable information from trusted sources. Patients - or those caring for them - frequently find it difficult or impossible to obtain a diagnosis, or to access relevant information. Often there is a lack of medical expertise where they live. RareConnect helps patients and families to find what they need, including information they can take back to their own doctors.”
For more information or to speak to EURORDIS’ RareConnect Project Leader Denis Costello, please email denis.costello@eurordis.org or call +34 6 71 88 22 18. Patients or patient organisations interested in partnering with EURORDIS or NORD to develop an online community for their rare disease, can contact: robert.pleticha@eurordis.org
You can find RareConnect at www.rareconnect.org
About Rare Diseases
Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate, and research limited. Very few cures exist. While each disease is rare, collectively they affect more than 60 million people in Europe and the USA alone. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.
The European Union considers a disease as rare when it affects fewer than 1 in 2,000 citizens. Approximately 80% of rare diseases have a genetic origin. Over 6000 different rare diseases have been identified to date, affecting an estimated 30 million Europeans collectively.
About EURORDIS
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 571 rare disease patient organisations in 52 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.
Further details concerning EURORDIS and rare diseases are available at:www.eurordis.org
About NORD
NORD is a non-profit organisation representing all individuals and families affected by rare diseases in the USA. It was established in 1983 by patient organisation leaders who had worked together to get the Orphan Drug Act adopted.  NORD provides programmes of education, advocacy, research and patient/family services to improve the lives of Americans affected by rare diseases.  Learn more about NORD at www.rarediseases.org

Press Contact
Denis Costello
EURORDIS Web Communications Senior Manager & RareConnect Leader
Telephone: +34 6 71 88 22 18

Remember....Research is the key to your cure!

No comments:

Post a Comment

EPP Have you ever wondered why you have been sunburnt on a cloudy day?

            EPP Have you ever wondered why you have been sunburnt on a cloudy day? The total dose of UV radiation reaching the ...