Medical Progress
Staying informed of medical progress can give you insights into the latest advances in managing Hunter syndrome. Below are some important resources to keep you up to date.
National MPS Society
The National MPS Society provides frequent updates on news and events related to Hunter syndrome and other MPS syndromes. This includes news on medical advances, treatments, clinical trials, and scientific research. It also highlights stories in the media, annual family conference updates, public awareness fundraisers, and patient survey results. Visit the National MPS Society's "News and Events" page for more information: www.mpssociety.org
Ongoing Clinical Trials
You can get the updated status of the latest research and ongoing clinical trials in Hunter syndrome by searching the online database at www.clinicaltrials.gov. It is a registry of federally and privately supported clinical trials conducted in the United States and around the world. You can learn about a trial's purpose, who may participate, locations, and phone numbers for more details.
Medical Congresses
Medical organizations are an excellent resource for staying current on the latest developments in genetics and metabolic disorders, including Hunter syndrome. Most organizations host annual congresses that provide educational forums and networking opportunities for clinicians, scientists, industry, and patients.
Below is information on upcoming congresses of interest.
NSGC Regional Meeting
Organization: National Society of Genetic Counselors
Related Web Site(s): nsgc.org
Genetic Alliance Annual Conference
Organization: Genetic Alliance
Related Web Site(s): geneticalliance.org
International Congress on Inborn Errors of Metabolism
Organization: Society for Inherited Metabolic Disorders (SIMD)
Related Web Site(s): simd.org/meetings
The American Society of Human Genetics Annual Meeting
Organization: The American Society of Human Genetics
Related Web Site(s): ashg.org/
National MPS Society Family Conference
Organization: National MPS Society
Related Web Site(s): mpssociety.org/
New Publications on Hunter Syndrome
To do your own research on the latest information and advances in Hunter syndrome, you can search the medical literature at www.pubmed.gov. You can freely obtain abbreviated versions ("abstracts") of published articles from medical journals; in some cases entire articles are available free of charge.
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. It may be helpful to print out the information and articles from your search, and bring them along to your medical appointments.
You should understand that medical literature often contains complex medical and scientific information that can be misunderstood or be very difficult to understand. Different sources of medical information are also subjected to different levels of review and analysis, making some articles more highly regarded (such as peer reviewed literature) than others. We suggest that you discuss the information that you find with your doctors, before making any medical decisions.
Medical literature often contains a vast amount of information that may reflect different points in overall medical knowledge (depending on the date of the publication), may contain information about unproven therapies or medical approaches, and may contain scientific or medical opinions intended to generate discussion among trained medical professionals. Getting help from your medical team in understanding this information is very important.
