Our missions
Five commitments to children with CDA and their families
Yodalix grew out of one family’s experience of a rare disease. Here is what drives us today, and what we want to build in the months and years ahead.
MISSION 01
Ongoing
Raising CDA awareness
Congenital dyserythropoietic anemia affects only a few hundred people around the world. It is still little known to the general public, and even to many health professionals.
We explain the disease in simple terms, share personal stories and pass on medical knowledge, so that families and caregivers can better understand it.
MISSION 02
Ongoing
Promoting donation
Children with CDA may need regular blood transfusions throughout their lives, and every single bag of blood comes from a generous donor. For some of them, a bone marrow transplant is also a possible treatment.
We encourage people to give blood and to sign up to the bone marrow donor registry, which is open to anyone in good health aged 18 to 35.
MISSION 03
Every month
Action for children
When a child comes to the hospital often, those days take up a big place in their life. Games, activities, moments of respite: we want to make them gentler.
Our goal: one fundraiser every month, donated to a different hospital in France where a child with CDA is being treated.
MISSION 04
Next step
Supporting families
A rare disease diagnosis often leaves parents alone with a great many questions. We want them to find answers, information and support quickly.
We plan to create a registry of patients with CDA, and to become the first point of contact for families as soon as their child is diagnosed.
MISSION 05
Medium to long term
Helping research move forward
A disease this rare is little studied, and treatments are still limited: transfusions, iron monitoring and sometimes a transplant.
We want to create or support research projects dedicated to CDA and to new therapeutic approaches, so that one day children will depend far less on regular transfusions.
And you — how can you help?
Every action counts in raising awareness of CDA and supporting the children who live with it.
