RARE AND ORPHAN DISEASES
INFORM - SUPPORT - RAISE AWARENESS - EDUCATE - HELP RESEARCH
Individual help: we offer information, support and resources to people with a rare disease, their caregivers and health professionals through our
. We share information on rare diseases and issues surrounding them.
. We raise awareness about rare and orphan diseases in the population and the medical community.
. We help advance knowledge on the various rare diseases by building links between patients and researchers.
What People Are Saying
"I did some research and found your grouping. It was a relief for me. A relief that there is a group of parents / people who can feel supported and accompanied in this difficult ordeal."
— Skye's mother, Read More
"It took seventeen (17) years to know my diagnosis. I had several melanomas, a mastectomy, a thyroidectomy, a hysterectomy and hamartomas in the head that trapped nerves in my face. And, I have chronic pain."
— Amélie, 30 years old, suffering from Cowden syndrome, Read More