Links
 
   

Links

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GENETICS
Glossary of genetic terminolgy from GeneTests
Glossary of cytogenetic terms from Association of Genetic Support of Australasia
GeneTests (funded by National Institutes of Health) Information on laboratories, clinics, information resources.
NOVA Online: Cracking the Genetic Code
OMIM - Online Mendelian Inheritance in Man
Association of Genetic Support of Australasia
GAPS Index: Genetic Information and Support
Genetics Education centre (University of Kansas Medical centre) (Contains links to a range of resources and information pages on the human genome project.)
Genetic Alliance

RESEARCH GROUPS and PROFESSIONAL ORGANISATIONS
European Study Group on Lysosomal Diseases
British Inherited Metabolic Disease group
Society for Inherited Metabolic Disorders USA
Society for the Study of Inborn Errors of Metabolism International
Garrod Association Canada

Laboratory for Lysosomal Diseases, University of Medicine, Cluj, Romania In Romanian & English

CLINICAL TRIALS
NIH clinical trials

MRC Clinical Trials Unit

NHS electronic library clinical trials information


PUBLICATIONS
Interpreting scientific papers a guide for non-scientists
Peer Review Guide "what is peer-review".

FreeMedicalJournals.com Access to free journal articles (multiple languages)
PubMed a service of the National Library of Medicine

 

SUPPORT GROUPS & RESOURCES

Metabolic Disease/Rare Disorders/Lysosomal Disorders
CLIMB - Children Living with Metabolic Diseases The UK National Information and Advice Centre for Metabolic Disease
National Organization for Rare Disorders - NORD, USA.
New Zealand Organisation for Rare Disorders
Lysosomal Diseases New Zealand
European Organisation for Rare Disorders
Canadian Organization for Rare Disorders
Lysosomal Diseases Australia
Vaincre les Maladies Lysosomales Francais
Alteraciones de Crecimiento/desarrollo y Enfermedades Lisosomales - ADAC Espanol

Patient Organisations & specific disease resources
National Tay sachs and Allied Diseases Association Neurological disorders
International Society for Mannosidosis and Related Disorders Glycoprotein disorders

Cystinosis
Cystinosis Research Network
Cystinosis Foundation UK
Cystinosis Foundation Ireland
The Cystinosis Foundation
Cystinose-Selbsthilfe e.V Cystinosis Foundation, Germany

Fabry disease
Fabry Support and Information Group
Fabry Society of Canada
Fabry Community Genzyme Corporation site
Fabry Pasientforening, Norge
Fabryquebec Francais
Fabrysuisse Deutsch, Francais, Italiano
Fabry Spain Espanol
Morbus Fabry Selbsthilfegruppe e.V. Deutsch

Gaucher Disease
National Gaucher Foundation
Gauchers Association
Eurpean Gaucher Alliance
Children's Gaucher Research Fund
Gaucher Gesellschaft Deutschland e.V
Associazione Italiana Gaucher
Asociación Gaucher de Colombia
Israel Gaucher Association
Asociación Gaucher Argentina
Gaucher Vereniging Nederland
Japanese Gaucher Support Club

Leukodystrophies, Krabbe disease
Hunter's Hope Foundation
Krabbe's Family Network
United Leukodystrophy Foundation

Mucopolysaccharide Diseases

Join The Search a campaign to encourage early diagnosis of MPS disease.
Mucopolysaccharide & Related Diseases Australia
Canadian MPS Society
National MPS Society
USA
Society for Mucopolysaccharide Diseases UK
MPS I disease Genzyme Corporation site
What is MPS I? BioMarin Pharmaceuticals site
What is MPS VI? BioMarin Pharmaceuticals site
MPSVI.com BioMarin Pharmaceuticals site
Alliance Sanfilippo
Brazil MPS website
Asociación de las Mucopolisacaridosis y síndromes relacionados
Gesellschaft fur Mucopolysaccharidosen und Ahnliche Erkrankungen
Foreldregruppe for MPS sykdommene (FRAMBU)
Gesellschaft für Mukopolysaccharidosen
L’Associazione Italiana per le Mucopolisaccaridosi e Malattie Affini
Spolecnost pro mukopolysacharidosu
Verein für Mukopolysaccaridosen Schweiz

Neuronal Ceroid Lipofuscinoses, Batten's disease
Batten Disease Support and Research Association
Batten Disease Family Association UK
NCL-Gruppe Deutschland e.V.

Niemann Pick Disease
National Niemann-Pick Disease Foundation, Inc.
The Niemann-Pick Disease Group (UK)
Ara Parseghian Medical Research Foundation
Fundación Niemann Pick de España
Die Niemann Pick Selbsthilfegruppe e.V.

Pompe Disease (Acid maltase deficiency; glycogen storage disease type II)
Acid Maltase Deficiency Association
International Pompe Association (IPA)
United Pompe Foundation
Pompe's Group of the Association for Glycogen Storage Disease (UK)
Vereniging Spierziekten Nederland
SHG Glykogenose Deutschland e.V
Erasmus Medical College Pompe Centre
Pompe community - Genzyme Corporation site

 

 

 


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