The University of Iowa's MORL team has just announced an innovative study that will provide researchers a better understanding of atypical HUS, from when a patient’s aHUS first appears (acute phase) to when aHUS is brought under control (chronic phase).
Since rare disease populations are relatively small, especially true with aHUS patient numbers, we’re sending out a ‘Call to Action’ and asking all patients to participate. (There is no cost to participate.) There are so many unanswered questions, but data is needed to gain answers – so the the University of Iowa is launching a long-term (longitudinal) follow up of patients at all stages of atypical HUS.
Be part of the team that sheds light on the mysteries of aHUS - and by helping researchers gain more information you're not only helping yourself to build a brighter future, your are in turn helping other aHUS patients now and in the years to come!
FMI about MORL, Click Here to see our site's expanded listing about their programs.
NIH – National Human Genome Research Institute: an overview and resources regarding the Genetic Information Nondiscrimination Act of 2008.
Excerpt from the NIH site:
“Many Americans fear that participating in research or undergoing genetic testing will lead to them being discriminated against based on their genetics. Such fears may dissuade patients from volunteering to participate in the research necessary for the development of new tests, therapies and cures, or refusing genomics-based clinical tests. To address this, in 2008 the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination in the workplace and by health insurance issuers. In addition, there are other legal protections against genetic discrimination by employers, issuers of health insurance, and others.”
Under construction - Please check back for updates.
The Importance of the Iowa Biomarker Study for aHUS Patients & Their Families, upcoming blog by Director or Founder of The Atypical HUS Foundation.