Rare disease patients find comfort in numbers
Sometimes when you’re ill or you’re caring for a loved one who’s ill, you just want to talk to someone who understands exactly what you’re going through.
If the illness is a rare disease, however, that ‘someone’ may live on the other side of the world and speak a different language. An impossible situation, right? Actually, no.
Since 2010, patients around the world who are living with a rare disease as well as their carers have been turning to RareConnect, a platform that enables them to meet online, share stories and learn from each other.
In Europe, a disease or disorder is defined as rare when it affects fewer than 1 in 2,000 people. According to Eurordis ‒ the organisation that supports 30 million people affected by rare diseases throughout Europe ‒ there are more than 6,000 rare diseases, 80% of which are of genetic origin, and are often chronic and life-threatening. Some 50% affect children.
In addition to helping patients and their carers feel less isolated, RareConnect plays an important educational role. “People living with a rare disease have a unique insight about how to manage their condition and symptoms after years of trial and error. They can offer information that is complementary to add to the information patients get from healthcare professionals,” explains Robert Pleticha, Online Patient Communities Manager at Eurordis, which set up RareConnect because it saw a need for patient associations to stay in contact with people living with a rare disease. For example, Heileen and her mom found crucial support in RareConnect when Heileen was diagnosed with Myhre Syndrome at the age of four.
At the moment the platform has 80 online disease-specific communities, and many more are expected to launch soon. Even if there’s no community set up for a specific disease yet, people can open or join a discussion group to see if anyone else out there has information about a rare disease. It’s not uncommon to see comments in these forums like “Is there anyone with [xxx] disease?” or “My son/daughter has [xxx] syndrome. Does anyone know about this?”
Robert tells This Is Medtech that it’s incredibly gratifying to see all the connections made through RareConnect, whose members say they particularly benefit from it because:
– It’s a non-profit, patient-led platform where personal data will not be used for commercial purposes;
– The content is available in six languages with quality human translation;
– Content and discussions are mediated through experienced moderators; and
– Patient organisations are involved as official partners and moderators.
Between RareConnect and Rare Disease Day, an annual international awareness-raising campaign that falls on the last day of February (today!), the collective voice of rare disease patients and their families is getting louder all the time.