Concerned about getting the best care possible for aHUS patients?
If your loved one has aHUS, The Atypical HUS Foundation provides a list of volunteer physicians experienced with aHUS diagnosis, treatment options, and multi-organ issues that may cause complications for the aHUS patient. Let your doctor know about the Doc to Doc Directory. This is a physician-to-physician service that ensures YOUR doctor, and the aHUS patient's entire care team, has access to the most current aHUS medical information.
From our listing for the Doc to Doc Directory:
Physicians with expertise in aHUS diagnosis, treatment, and patient issues offer phone and/or email consultation with other medical personnel. Top aHUS clinicians and researchers from across the USA, as well as Canada and the UK, provide information and physician outreach as a volunteer service striving to improve aHUS patient outcomes.
What can you do, as an aHUS patient, advocate, or caregiver?
Atypical aHUS is quite rare. (In America, the rate of aHUS patients is estimated at 2 people per 1,000,000 population. Current USA population is just over 320,000,000.) Few doctors ever see a single case of aHUS in their career or within their practice, based on the small population affected by this rare disease. In rather a 'double whammy' of unfortunate events, not only is aHUS one of the smaller rare disease populations, but atypical HUS can affect multiple organs with different complications, some of which can be life-threatening.
The Atypical HUS Foundation is dedicated to promoting improved patient outcomes on a number of levels, to include physician education. To help you find important aHUS medical information, our organization collaborates with researchers, clinicians, biopharmaceuticals and others who deal with aHUS medical information within their professions. Our organization supports patient education by compiling valuable aHUS medical and research information, pointing out its context and implications for patients, and posting it all here to make it more easily accessible to aHUS patients, caregivers, and their family.
'Top Docs' with experience and background in aHUS have volunteered to help others in the medical community learn more about atypical HUS diagnosis, treatment, and complications that might arise for aHUS patients. They serve as volunteers in our Doc to Doc Directory because they can make a real difference in helping their fellow physicians!
Many doctors utilize this free, expertise by directly contacting those listed on our Home Page. If you're not sure whether YOUR physician and care team has tapped other doctors for consults, advocate! Consider whether you wish to PRINT THE Doc to Doc Directory LIST and hand it to your doctor or care team, so that they always have an ‘aHUS top doc’ available for free consults. (URL is http://atypicalhus.ning.com/page/doc-to-doc-directory).
Be an advocate, let your doctor know that free consults with physician experienced in aHUS diagnosis, treatment, and aHUS complications are simply an email or a phone call away!