Reference Material

Orphanet is a website supported by the European Union, which provides information in choice of Deutsch,English,Francais, Italiano, Espanol, Portugese
http://www.orpha.net/

Extensive information in English on many genetic diseases together with information on genetic testing, directories of laboratories and clinics.
www.genetests.org

Advocacy for Neuroacanthocytosis Patients
Newsletter www.naadvocacy.org

Chorea acanthocytosis – a very extensive and complete review provided only in English by GeneReviews:
http://www.geneclinics.org/profiles/chac
or
http://www.genetests.org/servlet/access?db=geneclinics&site=gt&id=8888891&key=L-29IZ2eihGKH&gry=&fcn=y&fw=VVLz&filename=/profiles/chac/index.html

Huntington's disease like-2
http://www.geneclinics.org/profiles/hd-l2

McLeod’s Syndrome –a very extensive and complete review provided only in English
http://www.genetests.org/servlet/access?db=geneclinics&site=gt&id=8888891&key=
SIvjd2q5ObAMU&gry=&fcn=y&fw=Vtlr&filename=/profiles/mcleod/index.html

Pantothenate kinase-associated neurodegeneration a very extensive and complete review provided only in English
http://www.geneclinics.org/profiles/pkan/
Sources of information especially for carers and Patients
Life in motion For Patients and caregivers: http://www.life-in-motion.org/mdrc.html
General sources of

PubMed – the web-based library of scientific papers
http://www.ncbi.nlm.nih.gov/entrez