Newsroom

It is with great sadness that the Intracranial Hypertension Research Foundation is announcing the closure of our research project, the Intracranial Hypertension Registry. As of this month, June 2020, the IH Registry has ceased all operations.  This was an extremely difficult decision for us to make. Like many others who have been financially impacted by the Covid-19 pandemic,...Read More »

The IH Registry (IHR), a project of the Intracranial Hypertension Research Foundation and Oregon Health & Science University, has published a study investigating the causes of death in IIH patients in the March 27, 2020 issue of Neurology, the journal of the American Academy of Neurology. It is the first time ever that researchers have looked at whether mortality in...Read More »

IH Registry Study Examines Emergency Department Usage by IIH Patients An IH Registry study examining emergency department (EDs) usage by previously diagnosed idiopathic intracranial patients has been published in the International Journal of Health Care Quality Assurance.  Since IIH can be a debilitating disorder that is difficult to identify and treat, a failure to manage IIH symptoms may force patients to...Read More »

Papilledema, or swelling of the optic nerves, is often considered a hallmark sign of intracranial hypertension. But what does your doctor see when he looks into your eyes? Read on to find out what papilledema is, why it develops, what a venous pulsation is and whether papilledema is necessary for an IH diagnosis. How does papilledema occur? The optic nerve...Read More »

April 2013— A multi-year, groundbreaking IH Registry study, “The use of acetazolamide during pregnancy in intracranial hypertension patients,”  which examined the effects of acetazolamide (Diamox) use in pregnant women with IH and their children was recently published in the March 2013 issue of the Journal of Neuro-Ophthalmology, the journal of the North American Neuro-Ophthalmology Society (NANOS). It is the...Read More »

IHRF, IH Registry Selected For NIH Global Rare Diseases Registry (GRDR) September 2012- The Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), NIH in collaboration with Patient Crossroads, Children Hospital of Philadelphia and WebMD, has launched a pilot program to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR). The Intracranial Hypertension Research Foundation...Read More »

Mayor Proclaims Rare Disease Day By Tylee Tracer March 1, 2012 (Editor’s note:This article originally appeared in the Paragould Daily Press) Paragould Mayor Mike Gaskill signed a proclamation Wednesday declaring it Rare Disease Awareness Day in the city. A group of seven women with a rare disease called Intracranial Hypertension (IH) spearheaded the development of the proclamation. The women wanted to have the day recognized...Read More »

IHRF Part Of NASA Research Team On Microgravity-Induced IH October 5, 2011- IHRF’s co-founder, Emanuel Tanne, M.D. and three of its Scientific Advisors—Conrad Johanson, Ph.D., Steven Katz, M.D and Michael Williams, M.D.— were appointed earlier this year to a special group of researchers and clinicians at NASA dealing with the problem of microgravity-induced intracranial hypertension and papilledema that some...Read More »

IHRF, Ad Hoc Group For Medical Research Urge Congress: Prioritize Funding for NIH, Medical Research in 2012 September 2011—The Intracranial Hypertension Research Foundation is among the 214 members of the Ad Hoc Group for Medical Research— a coalition of patient and voluntary health groups, medical and scientific societies, academic and research organizations— which have strongly urged Congress to prioritize critical funding for...Read More »

Shaler Woman Battles Rare Disease By Bethany Hofstetter September 16, 2010 (Editor’s note: This article originally appeared in the Pine Creek Journal/Pittsburgh Tribune Review Every day Cindy Urso wakes up with a migraine-strength headache. When the headaches aren’t completely debilitating and she is able to climb out of bed, she goes directly to the medicine cabinet. “I have bottles of prescriptions, I feel like it’s breakfast,...Read More »

Washington Governor Proclaims Feb. 28 as Rare Disease Day IHRF Asks Governor Gregoire To Join Other U.S. Governors in Focusing Attention on Rare Diseases and Chronic IH February 26, 2010- Washington Governor Christine Gregoire has declared February 28, 2010 as Rare Disease Day in Washington state, thanks to the efforts of the Intracranial Hypertension Research Foundation (IHRF). As part of the global campaign...Read More »