Resources
Below is a list of resources we have compiled to help.
Courageous Parents Network is a “destination created by families, for families, to support, guide and strengthen them as they care for very sick children.”
Global Genes offers “RARE Toolkits (which) provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients.
Gus Gear’s mission is to improve the safety and quality of life for those facing medical challenges. For more than a decade, we’ve worked passionately and diligently, delivering on that mission through the development, manufacturing, and distribution of high-quality medical devices at reasonable prices.
Miracle Flights “is the nation’s leading health and welfare, nonprofit flight organization. We fly children to distant specialize medical care.”
My Rare I.D. The Rare ID QR Medical ID card ensures reliable access to your health information in an instant. A quick scan of the QR code shows your personalized Rare ID health profile, complete with active diagnoses, current medications, known allergies, emergency medical treatment plans, and more.
NORD RareCare is a thorough listing of available resources for assistance with medications, appointments, transportation and lodging to and from medical appointments. Avery’s Hope offers a lodging assistance program under GI Disease.
The Oley Foundation is a medical resource and a place to meet others who are living life with TPN.
PALS Services is an organization that arranges for free transportation to medical appointments for patients and veterans.
ParentItForward is a resource for navigating the healthcare system.
Patients Rising Concierge is a free program that connects patients to a variety of free or low cost services