Here is information that I learned the hard way!

FOR RESEARCH and SUPPORT:
Symposium videos: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3820877/
http://www.umdf.org or 1(888)317-UMDF
http://www.charitynavigator.org for info on charities. BE SMART! Check them out before you write the check!
http://www.mitoresearch.org Mitochondria Research Society
http://www.mitosoc.org for the Mitochondrial Medicine Society (and the diagnosis toolkit).

FOR SUPPORT:
http://www.yahoo.com Online mito support group. There are also groups for feeding problems, hypotonia, etc.
http://www.mitoaction.org for mito information and resources.
http://www.acor.org/ped-onc/resources/airlineflights.html for discount information on flying for medical reasons.
I also have an OT and SLP article I can email you if you want it.

OTHER:

http://www.foodnews.org -- pesticides in food

http://www.sargeantsheaven.com/news Sargeant's Heaven, a book in dealing with loss.
http://www.soulumination.org/home.html for information on getting your sick child photographed.
http://www.savebabies.org for information on newborn screening
http://www.fodsupport.org for information on the fatty oxidation disorders.
http://zevex.com/enteral/pumps/infinity/ for THE BEST pump information (in my opinion).
http://www.edisonpharma.com/technology/science/ to read about a company trying to produce meds for mitochondrial diseases.
http://www.mattieonline.com to read about an incredible child who lived with mitochondrial myopathy.
Special shoes for special needs (children's orthopedic footwear):
www.hatchbacksfootwear.com, www.keepingpace.com, www.healthyshoestore.com
http://www.caringbridge.org/visit/calebryankelso to meet a little friend of Jude's.
http://www.heartbeatsformito.org for mito information.
http://www.emdn-mitonet.co.uk/ to read about mito and families living with mito.
http://www.elisangels.org for an org that helps mito kids.
http://www.varietychildrenscharity.org for an org that helps mito kids.
http://www.marcelsway.org