Krista Tibbs
 
 

  Resources
Links of Interest

 
The following links are informational only and do not imply endorsement by the organizations.
 
www.theneurologyofangels.com

 
www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm176526.htm
AUGUST 2009 -- FDA Issues Final Rules to Help Patients Gain Access to Investigational Drugs -- "The FDA has allowed expanded access to experimental drugs and biologics since the 1970s. That access has allowed tens of thousands of patients...to receive promising therapies when no approved alternative is available. The final rules balance access to promising new therapies against the need to protect patient safety and seek to ensure that expanded access does not discourage participation in clinical trials."
 
www.ulf.org/types/VWM.html
About Vanishing White Matter
 
en.wikipedia.org/wiki/Neuroglobin
About neuroglobin
 
www.theprojectcharity.org/wrdd.php
The Project: The Children's Rare Disease Network
 
www.rarediseases.org
National Organization for Rare Disorders
 
www.threelittleangels.org/our_story.html
Three Little Angels Pediatric Neurological Foundation
 
www.beyondbatten.org/
Beyond Batten Disease Foundation
 
emilycspecchiofoundation.org/wordpress/mission-statement
The Emily C. Specchio Foundation is a not-for-profit organization dedicated to support scholarships and fellowships for students who want to change the world for the better.
 
rarediseasefoundation.org/
Rare Disease Foundation was establish ed in February 2009 with the goal to change the lives of children and families affected by rare and undiagnosed diseases through social support, advocacy and treatment-focused research. They are a dedicated team of physicians, researchers and parents who know firsthand the difficulties of raising a child with a rare disease.
 
www.lincolnmaine.us
Author's childhood hometown
 
www.shadesofwhitematter.wordpress.com
Author's blog