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.

GenomeConnect
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.

RareConnect
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).

RareShare
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.

Wrightslaw
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.

Make-A-Wish Foundation
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.