Searching for answers when your child is suffering from a rare or undiagnosed condition can be confusing and frustrating. We have organized information from various websites that may reduce the frustration and help empower you to finding additional help. Many of our families have found the information below to be helpful and insightful.
NORD: National Organization for Rare Disorders
A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Airports and Special Needs Travel: A Complete Guide
Five steps to get through the airport as fast and efficiently as possible.
Air Care Alliance
A listing of organizations with volunteers flying to help others. Some of the listed sites are only regional, while some are nation and even worldwide.
Helps patients get to doctors and treatments that require travel.
Dedicated to helping families of children with special needs find ways for their kids to be kids first – patients later.
Children’s Miracle Network
Raises funds for Dell Children’s hospital and partnering hospitals in order to provide exemplary care for all children in need.
Courageous Parent Network
A destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child.
Interactive Wellness to revive the mind, body and soul.
Providing every individual with special needs the support friendship and inclusion that they deserve.
Connecting, empowering and inspiring the rare disease community.
Healthcare Hospitality Network, Inc
Provides lodging and support services to patients, families and their loved ones who are receiving medical treatment far from home.
Make a Wish Foundation
Serves a unique, and vital, role in helping strengthen and empower children battling critical illnesses.
Mercy Medical Airlift
Affiliated with National Patient Travel Center but can occasionally help a wider range of patients.
National Patient Travel Center
Provides information about all forms of charitable, long-distance medical transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network to ensure that no ﬁnancially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical transportation.
http://www.patienttravel.org/ or call 1-800-296-1217
Navigate Life Texas
Resources for families with kids with disabilities and special healthcare needs.
Specializes in working with people in transition to navigate the change, reach their goals and live a vibrant and flourishing life.
Ronald McDonald House
Find and support programs that directly improve the health and well-being of children and families.
St. Jude’s Children’s Research Hospitals
Provides paid care for children cancer patients through their facility.
An institute where many of the world’s leading scientists would turn breakthroughs in genetic research into medical advances benefiting patients and their families.
The Essential Guide to Traveling with a Medical Condition
Creates a community where all families of children with special needs thrive.