Rare Disease Awareness

Wegener’s Granulomatosis can be fatal if not diagnosed and treated in its early stages. I am one of the lucky ones! After years of trying to identify the cause of my illness, I found the wonderful doctors at Jules Stein Eye Institute and UCLA Medical Center.

Unfortunately, too many people go undiagnosed or the diagnoses comes after the disease has done extreme and sometimes fatal damage.

It is a terrible feeling to have serious health problems and the doctors and the tests cannot tell you why it is happening or what can be done to help you. Time goes by, some symptoms come and go while others get worse. You go to more doctors and have more tests, but the cause remains a mystery! Hoping, as things get more serious and more desperate, you keep searching for someone or something that will be of any help; but there is none to be found: WHY!?!

From National Organization for Rare Disorders (NORD):

Rare Disease Day (the last day in February)

What if you or someone you knew had a disabling or life-threatening yet obscure disease and almost nobody understood or seemed to care? That is the reality for tens of thousands around the globe who suffer with a rare disease. Due to lack of awareness, even getting a correct diagnosis is difficult.

Alone we are Rare, Together we are Strong

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. To help increase awareness and to draw support for finding treatments and cures, last day in February has been declared as Rare Disease Day.

Official US Rare Disease Day Partner

Vasculitis Awareness Month

The Vasculitis Foundation has declared the month of May as Vasculitis Awareness Month.

Vasculitis Awareness is an international effort organized by the Vasculitis Foundation (VF) to advance public awareness of this rare disease, as well as the progress in treatments and advances in research. By uniting, we can create an international coalition, which speaks stronger and louder than as a single entity.

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