Rare Disease Resources
Brave Community provides a variety of resources and publication information that
may be helpful in your pursuit for information about certain rare diseases. Remember
that the best guidance on your disease and how to manage your disease comes from
your doctors and their staff. You should talk to the medical professionals involved
in your care to ensure that you understand the information you are reading and help
decide what it may or may not mean for you.
Resources
National Institute of Neurological Disorders and Stroke
National Institutes of Health (NIH) Neurological Institute
» www.ninds.nih.gov
View More
Publications
Here is a short bibliography of a few examples of published articles about Fabry
disease to read or to share with your doctor. You can use the Searching Medical
Literature tutorial to learn how to search for the latest articles in medical journals,
and be sure to ask your doctor for any new publications. This list is not a complete
list of available published information about these topics.
Fabry:
Desnick RJ, Astrin KH, Bishop DF. Fabry disease: molecular genetics of the inherited
nephropathy. Adv Nephrol Necker Hosp. 1989;18:113-27. [PubMed ID 2564247]
Grünfeld JP, Lidove O, Joly D, Barbey F. Renal disease in Fabry patients. J Inherit
Metab Dis. 2001;24(suppl 2):71-74. [PubMed ID 11758682]
Linhart A, Lubanda JC, Palecek T, et al. Cardiac manifestations in Fabry disease.
J Inherit Metab Dis. 2001;24(suppl 2):75-83. [PubMed ID 11758683]
View More
Searching Medical Literature
The best guidance on your disease and how to manage your disease comes from your
doctors and their staff. While there are a number of sources of medical literature
available, before you make any medical decisions, you should talk to the medical
professionals involved in your care to ensure that you understand the information
you are reading and help decide what it may or may not mean for you.
Read More