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Finding Support and Information When Your Child Receives a Rare Disease Diagnosis
When your child receives a new medical diagnosis it can be helpful to seek support from other parents and caregivers who have been in your shoes. But if your child is diagnosed with a rare disease or condition it can be difficult to find information or a community of other families who share your experience. In this guide you’ll find resources that may help you as you begin to navigate life as the caregiver for a child with a rare medical condition.
Medical Identification Accessories
A medical identification or medical alert accessory can be a life saver in an emergency. It can provide critical information to a person assisting a child or adult who may not be able to communicate their condition or needs. If you or a loved one has a severe allergy, medical condition, disability or special need, adding a medical identification accessory to your daily outfit can alert emergency or medical professionals before they provide care. In this guide you will find more information about who may need to wear or carry some form of medical identification or alert, and the variety of accessories that are available for those who do.
Financial Support for Children with Special Needs and Medical Challenges
Having a child with a disability, a new medical diagnosis, or frequent medical care needs often results in added and unexpected costs for a family. Dealing with these financial burdens can make an already difficult situation even more challenging, which is why many organizations have made it their mission to help bridge the gap for families in need. In this guide you will find a list of organizations that may be able to help should you find yourself in need of monetary resources to fully fund or reduce the costs associated with medical care, travel, and basic living expenses.
Wish-Granting Experiences & Gifts
Wish-granting foundations help families lighten their load, granting wishes ranging from a trip to Disneyland to a new computer to a chance to throw the first pitch at a major league game. If your child has a serious illness, disability or medical condition they may be eligible to receive a gift or have a wish granted through one of the organizations listed in this resource guide.
Everyone Needs a Will – We Can Help
Writing a will is one of the most important things you can do for your family and your loved ones regardless of your financial status. If you have children with health care needs or disabilities, it is particularly important to have a will in place to ensure your child can continue to receive the care and treatment they need. Learn more about a free, online resource and special considerations.
Special Needs Trusts and ABLE Accounts
Learn about financial planning tools that are available to people with disabilities and how these tools can be used to protect assets and eligibility for means-tested government benefits (SSI and Medicaid).