Connect with the INADcure Foundation and other INAD Families. The INADcure Foundation oversees a private online forum for families to exchange information, ideas and advice. The online discussion forum is restricted to families, caregivers, and medical and scientific professionals who have direct connections with individuals who have been diagnosed with INAD.
The INADcure Foundation is here for all families of individuals who have been diagnosed with INAD and other forms of PLA2G6-related neurodegeneration (PLAN). While our primary purpose is to raise funds to support research, we also want to be a place where INAD families can come for support and to receive the most up-to-date information available on INAD and on current research initiatives.
We know first-hand the experience families face after receiving this devastating diagnosis, and we know that it is difficult to find a place where you can get answers to all of the questions that follow. And while we certainly don’t have all of the answers here, we strive to be a place where families can come to connect, ask advice, and seek support from others who are on this same journey – hoping that it provides a little bit of hope and comfort to know that you are not alone.
The INADcure Foundation oversees a private online forum for families to exchange information, and offer advice and support. The online discussion forum is restricted to families, caregivers, and medical and scientific professionals who have direct connections with individuals who have been diagnosed with INAD.
To join the forum and connect with other families, email us at [email protected].
This list has been compiled thanks to the help of many INAD families. If you have a resource that you found helpful, and that you would like to share with other INAD families, please email the information to [email protected] If you are looking for information or resources related to a particular subject, and can’t find what you are looking for here, please let us know and we may be able to help!
NORD’s Resource Center
Provides patients and caregivers with free webinars, fact sheets, infographics and other helpful materials to guide you on your journey with a rare disease.
Online tool people can use to share their genetic test results and health information with researchers and healthcare providers. You can also connect with other individuals who have a similar diagnosis or related symptoms.
Online communities for patients and families with rare medical conditions so they can connect with others and share their experiences. The project is a joint collaboration between EURORDIS (European Rare Disease Organization) and NORD (National Organization for Rare Disorders).
Online social hub dedicated to patients, families and healthcare professionals who are affected by rare medical disorders.
Genetic and Rare Diseases Information Center at the NIH (GARD)
Assists families who would like to learn more about rare diseases. GARD develops guides with tips on general topics, important resources, and answers to questions that patients, their families, and friends often have.
Information on Medical Waivers
Medicaid insurance (if you already have insurance you can use as supplemental to eliminate copays), respite care (skilled and unskilled), etc.
Feeding Tube Awareness Foundation
Support for parents of children who are tube-fed.
Blendtec Financial Assistance Program
Call Blendtec @ 1-800-748-5400 and ask about their application for financial assistance to purchase a discounted blender in order to begin a blended diet for your child. Refurbished blender comes to around $50.
Offers reliable information about special education law and advocacy for children with disabilities.
Special Education Guide (The IEP Process Explained)
A guide to individualized education programs for teachers and parents. Learn about the IEP process, including IEP meetings, goals, and accommodations.
Patient Advocate Foundation
Serves as a liaison between patients and their insurers, employers, and/or creditors to resolve insurance, debt crisis, and/or job retention matters related to their diagnosis.
Get a wish for your child granted! Must be 2 ½ or older to apply.
Free Lifetime National Park Pass
The Access Pass is a free, lifetime pass available to people that have a permanent disability that can be used at over 2,000 Federal recreation sites across the nation, including National Parks, National Wildlife Refuges, and many National Forest lands.
My Gym Foundation
A non-profit that helps provide equipment for children in need. Requests are limited to gifts of $500 or less, may include but are not limited to rehabilitative therapy, My Gym classes, assistive devices, medical equipment, and sensory items. Visit the website for an application.
The Exceptional Parent
A magazine that provides information, support, ideas, encouragement, and outreach for parents and families of children with disabilities and the professionals who work with them. Dedicated to being the ultimate resource for everything related to the special needs community.
If you would like to suggest a resource for this list, please email us at [email protected].