10 tips for geneticists from parents of children with undiagnosed and rare diseases

One of the biggest problems experienced by parents of children with long-term medical conditions is communicating and maintaining relationships with medical professionals. When the child has a rare disease or …

Rare Disease Day: How Dan’s rare disease didn’t stop his mainstream education

Rare Disease Day is at the end of February, with the theme ‘Disorders without Borders’. In Europe it’s coordinated by EURORDIS, the European Rare Diseases Organisation. Many children have special …

RareConnect

Living with a rare disease can be an isolating experience. RareConnect was created byEURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space …

s2Member®
Close