This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Wednesday, July 12, 2017

Resources for Advanced Medical Care and Travel

FINDING ADVANCED AND SPECIALIZED MEDICAL CARE

‘OpenTrials’ site launched as a one-stop shop for medicine trial information

The Undiagnosed Diseases Network (UDN) is a program run through the National Institutes of Health (NIH) that studies people with rare and unusual diseases with an emphasis on finding genetic causes.

How to Apply to the UDN

TRAVEL FOR MEDICAL CARE

National Patient Travel Center
"The National Patient Travel Center provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network."

 
Angel Flights 

America’s Best Inns and Suites are supposedly allergy/MCS friendly


FINANCIAL RESOURCES

Medical Cost Share is an alternative to "normal" medical insurance.  
 
OTHER RESOURCES
 
Yeti coolers are extremely effective at keeping food and medicines cold during travel.