Based in Barcelona, RareConnect is the online community forum for rare disease patients run by EURORDIS, the European Rare Diseases Organisation. As the Senior Online Communities Manager, Robert Pleticha, helped to grow and administer the platform, regularly travelling across Europe, assisting rare disease patient groups to set up new RareConnect communities, as well as speaking at conferences. (Rob worked for EURORDIS 2010-2017)
EURORDIS leads the flagship annual Rare Disease Day® campaign.
Robert was a SNJ columnist 2013-17.
- Join the discussions that are connecting the rarest of rare diseasesI've written on SNJ before about how the online community I help to manage, RareConnect, works to bring together families facing…Continue reading »
- The pain of finding acceptance with Apert syndrome, a facial differenceWe all have a basic need to be accepted by others. As many families affected by a disability know however,…Continue reading »
- How Jonah’s parents are connecting families with his rare disease -and how you can tooAs an online manager of international patient communities for many different rare diseases, I receive emails every day from parents…Continue reading »
- Rare Disease Day 2014: the largest awareness campaign ever, what’s next?I’ve been involved in the recognition and celebration of Rare Disease Day, which is today, for the past five years.…Continue reading »
- The parents working to find a cure for deadly Sanfilippo syndromeJonah was born in 2008 to excited parents in New York City. But at his first year check up, his…Continue reading »
- How growing up with disability can lead to a life of compassionWe often wonder at SNJ, as we all must, how our children with chronic illness, rare conditions or additional needs…Continue reading »
- Why online help is vital for people living with a rare disease you can only smellWe hear a lot about “invisible illness” and how young people with autism are judged or stared at because of…Continue reading »
- Volunteering: The best way to spend your summerTania says: We're heading off for Italy this weekend and because both boys have special needs, we've always rented a…Continue reading »