Networks
This web site contains information about myotubular myopathy. It also contains information about the three forms of myotubular myopathy, x-linked, autosomal recessive and autosomal dominant. Most of the information on this site relates to affected children, not adults.
Naitbabies are a patient organisation run by families who have a serious genetic disorder called neonatal alloimmune thrombocytopenia – NAIT (also known as FNAIT or FMAIT). This may cause unborn or newborn babies to bleed into their brain (ICH) and/or other major organs due to the maternal immune response against...
Narcolepsy Network is a national patient support organization founded in 1986. We are a nonprofit organization that relies on member dues and donations to fund our basic programs. Our primary focus is to: Educate and inform individuals with narcolepsy about this life-long neurological sleep disorder, available treatments and symptom management so...
The National Addison’s Disease Foundation was formed in 1985 by a young couple as a result of their experiences with Addison’s disease. At that time, there was no organization established which would provide guidance and information about what life was like living with adrenal insufficiency. There was no way to...
NAEVR is a non-profit advocacy organization comprised of a coalition of 55 professional, consumer, and industry organizations involved in eye and vision research. NAEVR’s goal is to achieve the best eye and vision care for all Americans through advocacy and public education for eye and vision research sponsored by the...