Rare Facts: Children represent the vast majority of those afflicted with rare disease.
Rare diseases are responsible for 35% of deaths in the first year of life.

Services:

Children with rare illnesses require extra support to attain the best quality of life. Because each illness is complex, we will take the time to understand the challenges and then we will help you secure appropriate resources. We can also help you obtain the information needed to make the best decisions for your child and your family.  We will make every effort to reduce your burden and you can be assured we do not charge a fee for doing so.

Our core service areas include:

Mental Health

Mental health programs for pediatric patients and the entire family. If needed, bereavement support is also provided.

Education

Comprehensive psycho-educational assessments to facilitate accommodations in the classroom. IEP guidance and counseling – as well as education support services if needed.

Financial

Temporary and emergency assistance for illness related expenses while connecting with long term resources. Yearly limit.

Spiritual

Connection to a faith community (all faiths) if desired. If you are already connected, we are happy to coordinate support. Faith is an integral part of this journey.

Advocacy

Provide guidance to navigate the confusion of insurance approvals; identification of patient assistance programs; and other resources to obtain necessary services.

Diagnosis Based Services

We will help you secure the resources most applicable to your child’s illness to ensure the best quality of life. We do not charge a fee for any of our services.

Because family members overlook their needs during their child’s medical crisis, we support parents, siblings, and grandparents too! The health & happiness of the entire family unit directly impacts the child’s ability to thrive.