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:

Hope & Healing

You are not alone. We understand the isolation, stress, anxiety and sorrow. That’s why we coordinate support services for the entire family to build resilience and overcome hopelessness. You need someone who understands the journey. We are here for you.

Rare Aid

Allocation for unexpected and urgent circumstances. Covered expenses are for health care related services, products, or diagnostics impacting quality of life. Allowance may also be used for end of life care or funeral expenses.

Educational Support Services

Determine accommodations needed to facilitate the best learning environment. Refer to partner organization to obtain comprehensive assessments required for IEP’s. Provide counsel and identify resources to help child achieve grade level expectations.

Patient Advocacy & Navigation Services

Empower families with the knowledge to advocate for their child. Identify greatest needs impacting quality of life and connect with medical, community, and social resources. Assist with navigation through child’s continuum of care.

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.