Medication side effects are common-
but when should you speak up?

Side effects may occur with any new treatment, including new medications, placement of a new medical device, surgery, or even physical or occupational therapy. We usually think of side effects when we begin to experience bad changes-when the treatment introduces new worrisome symptoms or problems. Most treatments have some sort of side effect associated with them, and many of us may wonder if side effects are simply the price we must pay for a necessary treatment.  Read more...  

Visit our website to learn more about common scleroderma medications and many of their potential side effects here.    

"Scleroderma is at once one of the great unsolved problems of modern medicine and a grand opportunity for biomedical research," states Dr. Dan Kastner, the newest member of the Scleroderma Research Foundation's Scientific Advisory Board. Dr. Kastner brings a unique background and perspective to the SRF, a blend of philosophy, clinical rheumatology, human genetics, basic immunology and administration uncommon in the hyper-specialized world of modern medical research. 

 Born and raised in Lockport, New York, a small city near Niagara Falls, Dan grew up in post-World War II working class America. His father, the son of German immigrants, dropped out of high school to work in the family auto repair shop; his mother, a stay-at-home mom, cared for Dan and his handicapped older brother. Read more... 

 The Cure Crew is growing! We're looking for people just like you to help raise funds and awareness for scleroderma across the country. Sign up today! It's fun, it's easy and we could use a hand.

New research supported, in part, by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has identified a new genetic link to systemic sclerosis (also known as systemic scleroderma) and confirmed three previously discovered links to the disease, which can cause thickening of the skin, narrowing of blood vessels and scarring of internal organs.

The study, which used a technique called genome-wide association to compare the genes of 2,296 people with systemic scleroderma to 5,171 without the disease, directed the scientists to a region of the genome not previously associated with the disease known as CD247. These findings, reported in the journal Nature Genetics, were confirmed during a second study involving 2,753 people with systemic scleroderma and 4,569 without the disease. The genetic material from the patients was collected through a collaboration of medical centers in the United States, Spain, Germany and the Netherlands.  Read more... 

The SRF will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2011. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.

"There are nearly 30 million Americans--and millions more around the world--affected by rare diseases," said Peter L. Saltonstall, president and CEO of NORD. "Everyone knows someone with a rare disease.  But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers. This leaves patients and families without hope for a better future."

For more information about Rare Disease Day activities in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org).