Connecting Children and Families Suffering From Rare Disease

When a child is diagnosed with a rare disease, the child and their family members may have a variety of feelings as a result of the diagnosis.  Sometimes it is difficult to share these feelings with others who are not directly affected by the disease.   Family members may want to keep their feelings private or they may want to protect other family members from their feelings in an attempt to protect them.

Our precious children who are affected by rare disease harbor their feelings as well.   Many children facing rare disease are strong and resilient throughout their trials with their disease.  However, it is important for them to voice how they feel and realize that they are not alone.  It is equally important for family members to reach out for help to others who are facing similar experiences.

The Project – Children’s Rare Disease Network  plans to connect children and their families to others affected by rare disease so they may communicate their feelings in a safe setting.   In addition, family members can share treatments and medical research that would assist in the direction of a child’s illness.  This initiative will strengthen communication and collaboration between children, their families, and the established community we are developing within The Children’s Rare Disease Network.   We would like you to join us in this effort to fight rare disease of all types and help us build this much needed community.

If you would like further information, please contact me:

Kathleen Covey
bcovey66@yahoo.com