2016 Program Book and Conference Schedule Now Available Online
The 2016 Scleroderma Foundation National Patient Education Conference is
only two weeks away! We're looking forward to this year's Conference in
New Orleans, LA, and we hope you are too. This year our Conference will
hold 74 workshops, of which 45 are being offered for the first time.
Conference program book and daily schedules - both for the general and
juvenile workshops - are now available to view online. Plan your
Conference weekend ahead of time!
It’s a common experience: Something goes wrong in a family. A child is diagnosed with a chronic illness or a disability. Maybe he or she gets into serious trouble. You’d think friends would draw closer at times like those. Many drift away instead.
Trying to get a diagnosis for a perplexing medical condition can be a long and
frustrating process. For rare diseases, a diagnosis may take years. The National
Institutes of Health's Genetic and Rare Diseases (GARD) Information Center
features information about thousands of rare diseases as well as resources to
help with diagnoses and finding appropriate care.
American Thoracic Society's Rare Lung Disease Week Starts on Monday, July 17
Lung Disease Week at the American Thoracic Society (ATS) represents a society-wide initiative to recognize the many rare lung disorders for which ATS PAR (Public Advisory Roundtable) Partner organizations provide support and guidance to patients and their families. For a series of one-week periods throughout the year, ATS PAR brings patient issues to the front and center of the Society's agenda.
Working with its PAR partner, from July 17 through July 23, ATS will develop and host links to information specific to Rare Lung Diseases.
Disclaimer: The Scleroderma Foundation in no way
endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is
provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.
The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our primary goal is to raise funds for our three-fold mission of support, education and research. The foundation has 20 active chapters and 160 support groups across the country.