Questions
Q: What is determined by a genetic disease
A: Any disease with a genetic component.
Q: Why does IGA focus on genetic disease and acquired birth defects
A: Genetics and biotechnology offer a great potential for prevention and effective treatment for diseases. IGA considers it of outstanding importance that these new tools are rightly, timely and adequately used to alleviate the burden of disease.
Moreover via genetic testing early, even pre symptomatic, and accurate diagnosis is possible. These technologies enable people to take diseases in time on family planning, early treatment and life style issues.
Q: Where can I find information about my disease?
A: Your physician is the responsible person and he could provide the relevant information or refer you, if necessary, to a specialised centre.
You could also enter internet and for rare disorders we advise
www.orpha.net
www.rarediseases.org
www.ibis-birthdefects.org
www.geneticalliance.org (Disease Info Search. Lay patient organization)
www.ghr.nlm.nih.gov (A publicly funded consumer information about genetic conditions.)
www.geneclinics.org (A publicly funded medical genetics and testing information Source)
www.ncbi.nlm.nih.gov (A publicly funded. PubMed, a service of the National Library of Medicine)
There may be a patient organisations for your disease in your country which usually has much relevant information and adequate advise.
If this fail you may contact the genetic alliance if there is one in your country or else another one from the membership list mentioned in "about IGA".
|
