Speak Up! Your Voice Matters.
Last month: We invited you to take a scleroderma QUIZ and provide your feedback on how we can make Insights eNewsletter an even more valuable resource. Thank you for your participation, feedback and encouraging words. In case you were keeping track, following are the answers to the QUIZ and how our readers responded:
How many clinical trials are ongoing or currently enrolling patients?
- Answer - More than 50, which 27% of you answered correctly. The encouraging news is that scleroderma clinical trials are growing at a rapid pace and, with more interest from industry, we anticipate this number to continue to grow. Inquire with your primary care physician and/or rheumatologist about ways you could become involved or visit the clinical trials section of our site to learn how to search for trials that might be right for you.
What percentage of scleroderma patients are female with disease onset between the ages of 30 and 60?
- Answer - 80%, which received 45% of your responses. A startlingly statistic for sure and one researchers focus on to understand the role that gender plays in scleroderma.
How much funding is projected for scleroderma research for FY2013?
- Answer - $25 million, no doubt encouraging to the majority of respondents who selected $10 million or less. Since 2008, there has been a 20% increase in funding from National Institutes of Health, however scleroderma funding levels are not on par when compared to other diseases with similar incidence rate and cost to society.
Tell us what used to be the most lethal scleroderma complication and what it is today.
- Answer - It used to be that renal crisis (kidney failure) was the most lethal complication of scleroderma; however, with the introduction of ACE inhibitors, today, Pulmonary Arterial Hypertension (PAH) is considered to be scleroderma's most life-threatening complication. The encouraging news: the pharmaceutical industry is rising to meet the need with drugs that increase the blood supply to the lungs and decrease workload on the heart.
This month: February 28, 2013 is Rare Disease Day. An international day that brings awareness to the challenges faced by those living with a rare disease, it also highlights the hope that the future holds for those afflicted. Click on this month's survey to tell us what you consider the greatest challenge posed by scleroderma and what keeps you optimistic about the future of research. We'll share some of your answers next month.
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.
In the U.S., any disease affecting fewer than 200,000 people is considered rare as defined by the Orphan Drug Act of 1983. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.
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. The efforts of Rare Disease Day brings worldwide awareness of the common challenges and experiences faced by rare disease patients and their families.
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