The video highlights the struggle that rare disease patient’s face, often being unable to find answers and medical solutions they need, yet it also emphasises the importance of research and the possibilities that it can bring. Read more about Océane, who is living with pemphigus, Geoffray, who is living with retinitis pigmentosa, Mathieu, who is living with congenital myasthenic syndrome, and his mother.
The collaboration of all those involved in the video is symbolic of the unity and solidarity that families, professionals, policy makers, researchers and industry demonstrate with people living with a rare disease. Share the video to become part of the international campaign!
TO WATCH THE VIDEO; PLEASE CLICK https://youtu.be/2KPF0BXA7G4