Families of children with rare diseases

For moms whose child/children have been diagnosed with a rare disease. Facing the challenges of the illness as well as the lack of knowledge, support, and treatment the comes with a "rare" diagnosis.


Fibrous Dysplasia

Would love to hear from other mums that have children with fibrous dysplasia. As it is rare there are very few people with it. My son has it affecting the bones in his face and...



I was blissfully ignorant about rare diseases before my son was born, in fact I don't ever remember hearing that label used. When my son was 20 months old he was diagnosed with...