Find out about networks available for those affected by rare diseases.
If your child suffers from a disease, it can be a long, frustrating road to find a diagnosis – especially if it’s a rare disease. Thankfully, information is more readily available than its ever been and the digital age has made it much easier to connect with other parents whose children have a rare disease. As well as Facebook groups, there are superb websites like RareConnect.org dedicated to the cause.
What is a rare disease?
Different places have different definitions of a rare disease. The EU defines a rare disease as one that affects less than 5 in 10,000 people. There are between six and eight thousand known rare diseases. While around five new rare diseases are described in medical literature every week.
RareConnect is an online platform launched in 2009. It was created by the European Organization for Rare Diseases and the United States’ National Organization for Rare Diseases. Patients, families and patient organisations affected by rare diseases use the site. It allows them to develop communities and discuss these conditions. There are currently 35,000 members using the network all over the world.
A truly international network
Incredibly, everything that’s posted on RareConnect is universally translated by Google Translate. A moderator approves all the translations before going online. This is especially important for those from developing countries where information on rare diseases can be very scarce. RareConnect breaks down the language barrier to create a truly global community of those fighting these diseases.
Ultra rare conditions
As well as catering to rare diseases, RareConnect also supports those affected by ultra rare conditions. In the UK, these are defined as those affecting less than one in 50,000 people. RareConnect allows users affected by such conditions to become community moderators and create their own groups.
For more information, visit rareconnect.org.