Rare diseases contact Registry

Rare diseases contact Registry

The most common symptoms that patients with Dent s disease experience are related to the passage of kidney stones, such as pain or blood in the urine. Some patients can have foamy urine (a manifestation of proteinuria) and increased thirst. If patients…

Rare blood diseases in U.S

Rare blood diseases in U.S

Most mornings, my commute is a 12-minute drive from my home in the hills above Danbury, Connecticut, to the nearby NORD offices. But Tuesday’s commute started early – 5:30 a.m. – with a train ride into New York City and a brisk walk up 42nd Street to…

Rare disease Awareness Day

Rare disease Awareness Day

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare…

Rare Venereal diseases

Rare Venereal diseases

The science of keeping fit: fighting venereal disease in world war I alexandra M. Lord Keeping Fit, Department of Health and Human Services In 1917, when the United States entered World War I, mothers and wives wrote to President Wilson asking him to…

Rare diseases EU definition

Rare diseases EU definition

The European Commission is increasingly supporting collaborative initiatives focused on research into treatments and drugs for rare diseases, but lack of funding continues to be an issue. Gary Humphreys reports. “It was like being hit by a tsunami.” French…

Rare blood disorders list

Rare blood disorders list

WHO WE ARE — Seattle Cancer Care Alliance is a world-class cancer treatment center that unites doctors from Fred Hutch, UW Medicine and Seattle Children s. Learn More At Seattle Cancer Care Alliance, our doctors treat blood disorders, whether malignant…

Rare diseases with chronic diarrhea

Rare diseases with chronic diarrhea

Abstract Vibrio parahaemolyticus usually causes a self-limiting acute diarrheal illness, and is rarely tested for in cases of chronic diarrhea. We present a rare case of chronic diarrhea caused by V. parahaemolyticus in a heart transplant patient requiring…

Rare blood diseases in babies

Rare blood diseases in babies

To really understand rare conditions, you need a lot of data from a lot of patients. But no one hospital or center usually sees more than a few patients with any given rare disease, precisely because they’re rare. This is where case registries become…

Very rare blood diseases

Very rare blood diseases

Blue-skinned people? Vampire Syndrome? When we were kids, we couldn t hear enough about illnesses, horrid medical conditions or weird diseases. Not much has changed since then. When we hear about an outbreak of a flesh-eating bacteria or some other rare…

Rare blood disorders that cause death

Rare blood disorders that cause death

A rare blood disorder could be the reason why King Henry V had so few children, despite marrying six times. The condition could also be behind the King’s transformation from a witty and athletic youth to an overweight and unstable tyrant by the time he…

Rare disease that in the blood

Rare disease that in the blood

Mr. B, a 50 year old patient from Saudi Arabia came to me with bleeding while passing stools (also read this interesting case ) since childhood. He was often treated for piles in his country but there was no relief. Ultimately being frustrated with his…

Rare diseases caused by Microorganisms

Rare diseases caused by Microorganisms

(CBS News) Lyme Disease, spread by deer ticks, is much more common than we thought. About 30, cases are reported each year, but on Monday, the Centers for Disease Control said the is more like 300, . Harry Woske CBS News In June 2011, 89-year-old Harry…

Rare diseases with high fever

Rare diseases with high fever

Ashton and Isabelle visit Michael while he is in the hospital with meningitis Advertisement - SNO Ad Network Ashton supports her little brother while he is in the hospital Medical Mysteries “Life can always be worse.” The family of Juan Diego Catholic…

Rare tick blood disease

Rare tick blood disease

Spirochetes Unwoundby Microbe Fan. With kind permission of the author. by Microbe Fan The deer tick, Ixodes scapularis. Photo: Scott Bauer, USDA Agricultural Research Service, Bugwood.org. Source. In the northeastern United States the Lyme disease spirochete…

Rare blood disease that affects kidneys

Rare blood disease that affects kidneys

My wife recently passed away from Wegener s, which was not diagnosed until her kidneys had begun to fail. My family and I were caught by surprise because it took her so quick. Is it possible that she had Wegener s for a long period of time? We want to…

Office of rare diseases NIH

Office of rare diseases NIH

I will start by saying that rare diseases are a significant player in modern healthcare that are often overlooked or ignored because they are not widely known. Some of the following suggestions come from my experience having been diagnosed with numerous…

Blood disease rare leukemia

Blood disease rare leukemia

Medical Author: Michael Lill, MD Medical Editor: Leslie J. Schoenfield, MD, PhD Medical Revising Editor: Melissa Conrad Stppler, MD One of my more vivid memories from the early days of my training in hematology (blood diseases) in Perth, Australia is…

Rare blood disease XLP

Rare blood disease XLP

By Steve Benowitz Special to NHGRI (Left-right): Jennifer Cannons, Roseanne Zhao (lead author), Pam Schwartzberg A rare, genetic disease found only in boys is helping researchers at the National Human Genome Research Institute (NHGRI) unlock secrets about…

Rare blood disorders or diseases

Rare blood disorders or diseases

The public health system encompasses governments, healthcare providers, and others working to improve population health. The lack of a public health framework for many blood disorders, both rare and common, is a particular concern. For example, even a…

Rare disease Specialists

Rare disease Specialists

No matter how much you’ve prepared, no matter how many crises you’ve been through, you may still not be prepared for the “what’s next.” Unexpected reactions and rare occurrences seem to happen to us. Yet you have to function, you have to support your…

Rare diseases that cause nausea

Rare diseases that cause nausea

Last night I had an event in which caused paralysis to my limbs and upper body, made me unable to speak, caused my heart rate to spike, my oxygen and breathing to decline, and caused severe chest and muscle pain and nausea. I have had many of these events…

Rare blood disease Acronyms

Rare blood disease Acronyms

The Man With Rare Blood Has Cured Over 2million Of Rhesus Disease and Still Counting: ‘Man with the golden arm’ saves 2million babies in half a century of donating rare type of blood After needing 13 liters of blood for a surgery at the age of 13, a man…

Rare blood disease attacks the bone

Rare blood disease attacks the bone

This September marks the 3rd Who is amy? gala to benefit education at the University of Colorado Medical School and the Mayo Clinic’s research efforts to find a cure for amyloidosis—a rare blood disease in which amyloid proteins are abnormally deposited…

Rare diseases database

Rare diseases database

National organization for rare disorders – welcome to nord, Information about nord, its programs, special events and the variety of services offered. includes a rare disease, organization and orphan drug database. diseases are. Genetic and rare diseases…