Dental
- Humanitarian Foundation: The Grottoes of North America Humanitarian Foundation is a 501 (c) (3) nonprofit organization that brings “Special Smiles” to children with special needs by providing them much-needed dental care through their Dental Program.
Wishes
- Make A Wish Foundation: Make-A-Wish has granted hundreds of thousands of life-changing wishes to children battling critical illnesses.
- Sunshine Foundation: Sunshine Foundation’s sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged, and abused children ages three to eighteen, whose families cannot fulfill their requests due to financial strain that the child’s illness may cause.
Family Fun
- A Kid Again: A Kid Again is a children’s charity that provides cost free and recurring events for children with life-threatening conditions.
Patient Advocacy
- Patient Advocate Foundation: The Patient Advocate Foundation (PAF) provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses. Services include help with the following: access to care; co-pay assistance; social security disability applications; and insurance appeals.
- National Organization for Rare Disorders (NORD): is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.
Respite Care
- Freedom Care– FreedomCare is the leading provider of CDPAP, a Medicaid-funded program that allows families to hire their own caregivers: a daughter, son, relative, friend, or previously hired aide.
- You may qualify for help through government or private programs. Check with your State’s Developmental Disabilities Office.
Home Utilities
- Your local department of social services.
- 211 Information: 211 Information is a confidential service provided by United Way Worldwide. The service provides people with local information about human services for everyday needs such as food, housing, and health. This service also provides resources in times of crisis.
Books
- “The Zebra Alphabet” by Aditi Kantipuly. This is the world’s first alphabet book to raise greater attention for rare genetic conditions like Krabbe Disease. To purchase, please email thezebrabook@gmail.com.
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