Tag Archives: moderators

crowdfund

Crowdfunding and rare diseases: an expanding phenomenon

by Robert Pleticha We did a webinar about crowdfunding last year, and I attended the first ever UK Crowdfunding Day last November. Ever since, I’ve been thinking about how more rare disease patient groups…

support

5 ways to engage your online rare disease community

by Robert Pleticha People living with a rare disease have a lot in common. No matter the country, religion, or culture, everyone affected by a rare disease shares a strong…

labsss

Lab Tracker and Patient Advocacy Tool

by Robert Pleticha Linda, a moderator on the atypical HUS community and volunteer with the Foundation for Children with Atypical HUS created tools for people living with a rare disease, or…

man on computer

Highlighting the best practices of moderators

Highlighting the best practices of moderators: Frank on the Hereditary Spastic Paraplegia community   Frank Davis is the President of the Spastic Paraplegia Foundation, a person living with hereditary spastic…