Online global patient network RareConnect welcomes its 40th community

RareConnect.org, the successful, RareConnect homepagegrowing online network for rare disease communities, brings together thousands of patients, families, and groups who might otherwise be isolated. Through RareConnect, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. With human translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian or Spanish languages. Each of the rare disease-specific communities is supported by the full-time community managers who animate and promote the communities and support volunteer moderators from the member groups.

The newest member, RareConnect’s 40th community, for people caring for patients with rare undiagnosed brain disorders, was created with collaboration from patient groups, including the Wilhelm Foundation, SWAN UK, and SWAN USA. 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.”

Launched in 2009 as part of the strategic partnership between EURORDIS (European Organisation for Rare Diseases) and NORD (National Organization for Rare Disorders), the RareConnect network currently has over 4300 members involving over 300 patient associations.

RareConnect project leader at EURORDIS, Denis Costello explains: “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.”

Visit the RareConnect website for a full list of the current rare disease communities. 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


Author: Louise Taylor, Communications and Development Writer, EURORDIS

Page created: 30/04/2013
Page last updated: 22/08/2013
 
 
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