The annual awareness campaign organised by Rare Disease Day is an opportunity to sensitize the general public about rare diseases. On websites and social networks, numerous photographs highlighted the daily lives of patients affected by rare diseases. Also, short reportages were edited to promote the event. Though they do not draw a general picture of the diseases they deal with, they have to be credited for showing there is room for hope, whatever the pathology.
Patient testimonial video filmed in Spain featuring Lorena who lives with Phelan-McDermid syndrome and her brother Victor.
Patient testimonial video filmed in Croatia featuring Karlo who lives with neurofibromatosis type 1.
Patient testimonial video filmed in Romania featuring Alina and her son Filip who lives achondroplasia.
Ichthyosis Awareness Month 2019 : more than ever needed