LINKS
Ataxia
National Ataxia Foundation USA includes FAQ's and how ataxia is diagnosed
Autoimmune
A to Z list of Autoimmune conditions and links
Connective Tissue
Heritable Disorders of Connective Tissue National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) includes Ehlers-Danlos syndrome, Epidermolysis bullosa, Marfan syndrome and Osteogenesis imperfecta.
Endocrine
Australian Addison’s Disease Association
Australian Pituitary Foundation (APF) includes info on Acromegaly, Cushing's & Prolactinoma
General links
In Need of Diagnosis, Inc. (INoD) works with families and community to assist and support individuals distressed with disorders that have eluded diagnosis and to identify and encourage the implementation of protocols that will facilitate quicker and more accurate diagnosis.
www.mayoclinic.com The Mayo Clinic (USA) many medical conditions
Healthfinder.gov gateway to consumer health information maintained by USA Federal government
Minerals required by the body with Recommended Daily Allowance and foods that supply them - Calcium, Cobalt, Copper, Iodine, Iron, Manganese, Selenium, etc
Motor Neuron Diseases NINDS health-related material
National Center for Education in Maternal and Child Health (NCEMCH)
Highlights documents and reports in the Maternal and Child Health Library that are related to the history of maternal and child health in the United States and health services for children and families
The NORD Rare Disease Support Community connects patients, families with rare diseases for support and inspiration.
OMIM is a comprehensive, authoritative, and timely compendium of human genes and genetic phenotype
RareConnect: created to provide a safe place where people affected by rare diseases can connect, share experiences, and find information and resources.
Talking Glossary of Genetics
The National Human Genome Research Institute (NHGRI) created this glossary to help everyone understand the terms used in genetic research.
The National Human Genome Research Institute UDP website
The NIH Office of Rare Diseases UDP websiteSyndromes Without A Name- USA (SWAN-USA)
Vitamin D Council re Vit.D deficiency
Undiagnosed Disease Network (UDN) research funding program
NIH Undiagnosed Diseases Program National Institutes of Health - if you are in the USA and interested in participating in this clinical research program,
discuss the option with your primary physician or health-care provider.
Any medical condition that eludes diagnosis by a referring physician can
be considered undiagnosed and may be of interest to this pilot study.
Some patients wait years for a definitive diagnosis. For this study,
only a fraction of cases referred will be invited to proceed in the
study at the discretion of the programs medical team.
Pain links
Pain info NINDS health-related material from National Institute of Neurological Disorders and Stroke
The A to Z of Pain common conditions that cause pain
The National Pain Foundation USA - education, treatment options and support for people in pain
What can you do if you are undiagnosed? Help with pain. Undiagnosed children. Personal stories. List of diseases considered difficult to diagnose. Support forums for the undiagnosed.
