Rare Disease Online Communities

Meet and learn in your own language!

A new community for AKU patients has been launched online. To see the site, head to www.rarediseasecommunities.org/en/community/alkaptonuria-aku. Once you have registered, you can post your experiences of living with AKU, meet other AKU patients and hopefully find new ways they have come up with to combat the disease. There is also a FAQ section, and the facility to ask a medical expert anything that may be worrying you about AKU.

The community for AKU is part of a project called Rare Disease Communities, a joint collaboration between EURORDIS and NORD (the US National Organization for Rare Disorders). Rare Disease Communities is an online social network for patients and families to connect with each other, to offer support and to share vital experiences on aspects of living with a rare disease. “Organised into disease specific communities, the platform also provides links to quality information and involves patient associations in the governance and growth of each community”, explains Denis Costello, Web Communication Officer of EURORDIS and the driving force behind this project.

The website www.rarediseasecommunities.org is split into three sections: Understand, Meet, and Learn.

• The “Understand” section features patient stories and blog style updates from patients and patient organisation representatives.

• The “Meet” section is a forum, moderated by volunteers, offering human translation services in five languages. Since patients and families are spread thinly across the globe, it is vital to create a space where information can be shared through the best possible translation.

• The “Learn” section is a information resource in the form of frequently asked questions, documents, recently published news and scientific articles, upcoming events, and patient organisations’ contact information.

“Although several patient groups are using Facebook to exchange information, and there are other social networks designed to do this, the particular breakthrough of raredisesecommunities.org is that it has been tested by rare disease patients and families and is adapted to their needs; it can be translated into several languages and it is to be embedded in the two most internationally recognised and respected rare disease umbrella organisations - which brings value, protection, support and long term sustainability to the project” summarises Yann Le Cam, CEO of EURORDIS.

Each community is in 5 languages: French, Spanish, Italian, German, and English with a Forum section providing on-demand human translation services with 20 language pairings, thus enabling patients and families to communicate across language barriers. The translations are carried out by a network of paid translators hired by the project.

Users, interested in discussing their disease, register on the website. After registering, a user can upload his/her story of living with the disease through a link to his/her profile page. The story is then automatically added to the “Understand” section and is translated into all of the platform’s languages. Users can also participate in forum discussions or post their own questions. If a user sees a message on the forum that is not in one of the platform languages, they can request a translation. Within a few hours, the message is translated and uploaded automatically to the website. The user who requested the translation also receives an email with the translated content.

Another key aspect of the project is that it provides a ‘ready-to-use’ online platform that patient groups can use without any technical expertise. EURORDIS takes care of website maintenance and, through its strategic partnership with NORD, guarantees the voice of patients is protected from commercial interests. In addition, international patient networks for each disease collaborate to develop the community, along with EURORDIS and NORD, and play a key role in governing it, recruiting forum moderators, and being sources of information for patients and their families.

The project began with a community for CAPS disorders in 2009 and has now expanded to include a total of 7 communities with 289 registered members. After testing the newly developed website, and making it more user-friendly, the project now includes communities for Alkaptonuria, Von Hippel Lindau disease, Atypical Hemolytic Uremic Syndrome, Familial Mediterranean Fever, Behcet's Syndrome and Epidermolysis bullosa. These first communities brought together patient organisations from Europe, North America, and progressively from all continents, allowing them to connect and discuss treatment issues and quality of life challenges.

“Setting up the community was pretty easy on our part. All the hard work was done by EURORDIS, so we just had to collect info that we already had anyway and help promote the site to our members when it was ready,” explains Oliver Timmis from the AKU Society. “The community can also serve to further research into the disease. For example, we recently put a comment on the site to ask patients for dental samples for our research teams to study. We hope that by giving patients a more interactive forum for discussion, we can find more about the natural history of AKU and its progression in patients.”

Future plans for the Rare Disease Communites project include expanding to serve new diseases, such as Alternating Hemiplegia of Childhood and Multiple Myeloma, and the inclusion of summaries and links to free, full text scientific articles through a partnership with patientINFORM.

The project is co-financed by European Commission / Executive Agency Health & Consumers, French AFM-Telethon, French Federation of Pharmaceuticals (LEEM) and a new EURORDIS Corporate Partnership for Rare Disease Social Networks bringing together a diverse array of corporate partners who play an important role in supporting the operation of these communities without reciprocity.

The Rare Disease Communities project will be presented at the EURORDIS Membership Meeting Amsterdam 2011 on May 12. If you have any questions about the project or are interested in creating a new community contact Rob Pleticha, Online Patients Communities Coordinator at robert.pleticha@eurordis.org

This article was first published in the May 2011 issue of the EURORDIS newsletter

Author: Paloma Tejada & Rob Pleticha
Photo credits: © EURORDIS & AKU community & CAPS community