The national conference bribngs hope to those who may feel alone in the fight against scleroderma. Thanks to the generous support of many donors and chapters, conference scholarships are now available to the 2017 National Patient Education Conference to be held in Chandler, Arizona from July 21-23. Be sure to apply today as the deadline is March 16!
The foundation's FY 2015-16 Annual Report is now available for your viewing pleasure. Featuring a new look, the report covers the foundation's three key tenets: support, education and research. No report would be complete without a recap of Capitol Hill Day, our signature Stepping Out to Cure Scleroderma walks as well as financial information. Click here to view the report.
Do You Have Pulmonary Hypertension (PAH)?
We need your input!
Clinical trials for potential new
treatments, pharmaceutical companies need and value input from patients in the deverlopment of clinical trials for potential new treatments. A bio-pharmaceutical company is currently
developing a treatment for pulmonary hypertension (PAH) and the FDA stipulates
that they solicit and ultimately incorporate patient feedback. Your participation in this survey is critical
to the development of potential new therapies for scleroderma and related
conditions. Thank you for playing an
active role in this process. Your voice can help lead to promising results in
the near future! Please take this survey today!
Rare Disease Day is February 28
Rare Disease Day happens on the last day of February annually and is celebrated in 80 countries. The main objective of the day is to raise
awareness about scleroderma as well as a plethora of other rare diseases and the impact they have on patients’
lives. The campaign primarily targets the general public and also seeks to heighten awareness amongst policy makers,
public authorities, industry representatives, researchers, health professionals
and anyone else who has a genuine interest in rare diseases. Please visit www.rarediseaseday.org for more information.
Ten Years is a Long Time
The foundation salutes Director of Programs and Services Kerri Connolly on 10 years of service. As a driving force behind the growth and expansion of the Patient Education Conference, Kerri is integral in developing new programs and initiatives throughout the foundation's world. She also represents the foundation on the American Thoracic Society's Public Advisory Foundation, ensuring that the needs of scleroderma patients and researchers alike are heard. Congrats Kerri!
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.