August 12 is #InternationalYouthDay! This year, we’re celebrating Simone, a dedicated #YouthPartner with #RareKidsCAN who’s making a difference in the #RareDiseaseCommunity. Discover Simone’s journey and how she became involved with our work: tinyurl.com/nhhhtchu

#LivingWithRare #PatientAdvocacy

“If we can remove some of the barriers to accessing education—both visible and invisible—then we could support people with rare diseases in the right way” - ERDERA My name is Sofie Skoubo, and I'm a PhD student at the Department of Public Health, Aarhus University, The Danish National Rehabilitation Center for Neuromuscular Diseases and cooperate with the Norweg...

💬 Interview with Sophie Skoubo, Paralympian, PhD researcher, & rare disease advocate—Sophie Skoubo shares how telepresence robots can help children with neuromuscular diseases stay connected to their classrooms. 📲 Read the full interview: loom.ly/v91zvbs #ERDERA #LivingwithRare #RareDisease