Information and Resources for Caregivers

Community support for caregiver and family members

For caregivers who are also managing their own health due to Danon Disease, maintaining daily routines while addressing personal care needs can be challenging. Activities such as coordinating medical appointments, managing medications, preparing meals, and maintaining employment often require careful planning and support. Building a strong support system is important and can help reduce the burden of care.

Our Facebook Support Groups for Danon Disease, can provide practical insights and peer support from others with similar experiences.

Danon Disease Support Group

Danon Disease Advocacy, Support & Education

Insurance and financial support

Managing the many demands of living with Danon Disease—medical appointments, surgeries, school schedules, medications, therapies, and more—can be incredibly challenging. Caring for someone with Danon Disease can involve significant costs. While health insurance (private or public, including Medicaid) may cover some costs, additional support may be available through state and federal programs. Additional resources may also include Supplemental Security Income (SSI), home health services, and assistance with co-pays or prescription costs.

Here are a few resources that can provide additional information:

Children’s Health Insurance Program (Medicaid)

State Health Insurance Assistance Program

Patient Access Network Foundation

Managing school with Danon

Navigating the school system can be complex when your child has Danon Disease. Because the condition affects each child differently, it’s important to proactively communicate with the school and advocate for the support your child needs.

Start by sharing a letter from your child’s physician confirming the Danon Disease diagnosis with the school counselor or nurse. Provide any relevant background information to help them understand the condition. Expect questions—and consult your child’s medical team or reach out to us for support.

Next, request an evaluation for educational support services. Your child may qualify for either an Individualized Education Program (IEP) or a 504 Plan, depending on their specific needs. These plans can provide accommodations such as modified schedules, therapy services, or academic support. If possible, arrange for neuropsychological testing through a children’s hospital or external provider. The evaluation results can guide the school in creating an appropriate support plan. Documentation from specialists or summary notes from clinical visits can also be helpful during these discussions. Because Danon Disease is rare, most educators and school staff will be unfamiliar with it. This means you may need to take the lead in educating them. One effective approach is to write a letter at the beginning of each school year addressed to your child’s teachers, support staff, and school nurse. In the letter, briefly explain Danon Disease, how it may affect your child at school, and what to expect in terms of absences, fatigue, or medical needs. Be sure to include your contact information and ask staff to inform you of any issues or concerns. Maintaining open and ongoing communication with school staff can help create a collaborative environment and ensure your child receives the support they need.

View tips for managing education with Danon