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.
Because each illness is complex, we will take the time to understand the challenges and then we will help you secure the appropriate resources. We can also help you obtain the information needed to make the best decisions for your child and your family.
Once referred to Rare Kids Network, we will conduct an intake session and then create a diagnosis-based assistance plan. Next, we help secure resources to address the challenges impacting quality of life. Because the entire family is an integral part of the journey, we coordinate social support services to build resilience and to foster hope. Then, we focus on empowering families with knowledge and providing patient advocacy services to secure much needed resources. You will be relieved to have a designated nurse navigator to assist you and your family throughout your child’s continuum of care.
Rare illnesses are life changing. Each child’s future is uncertain. We understand your journey and we want to reduce your isolation, confusion & fear.
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.
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 directly impacts the child’s ability to thrive.