A Look Back at Rare Disease Day

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Bert Thomas SFA
SFA CEO Bert Thomas, PhD, MBA

Today’s post was written by Bert E. Thomas IV, PhD, CEO of the Sarcoma Foundation of America.

 

A little more than a year ago, I authored a blog post entitled, “Shedding Light on the Forgotten Cancer.”  I wrote this post in honor of Rare Disease Day, as a way of highlighting the needs of patients and families whose lives are touched by sarcoma – a rare cancer.  The year has flown by and we have once again observed another Rare Disease Day.  While Rare Disease Day always provides a wonderful opportunity to raise awareness and to unite our voices with those who are impacted by other rare diseases, it is only one day out of 365 (or in the case of this leap year, 366).

For sarcoma patients and their families, every day highlights the tremendous struggle of battling a disease that can be difficult to diagnose and that has limited treatment options.  As I wrote last year, sarcoma is often referred to as the “forgotten cancer” because of a lack of awareness, due in part to its rarity. Sarcoma is especially rare in the adult population, accounting for only 1 percent of all adult cancers.  Sadly, it is rather prevalent in children, as it represents about 15 percent of childhood cancer diagnoses.

Fortunately, we seem to be entering a new era with more pharmaceutical companies exploring experimental agents in sarcoma.  We have renewed hope that innovative therapies will made available to patients, providing new treatments to meet the extraordinary needs of the sarcoma community. To ensure that this progress continues, the Sarcoma Foundation of America (SFA) remains committed to advocating on behalf of these patients through our mission is to fund innovative sarcoma research, raise public awareness, and educate patients about their disease.

One way that we serve this community is through our national patient education conference series.  These events bring together sarcoma patients, sarcoma survivors, care givers, and expert doctors, to discuss the leading treatments and developments of sarcoma research. The educational conferences represent an exceptional opportunity for our members to gain insight and ask questions to leading sarcoma researchers and doctors.  This not only provides patients with information on the latest advancements in care, but empowers them to be powerful advocates for themselves.  It also empowers them to be advocates for the entire community and to help bring much needed attention to a rare, “forgotten” disease.

No matter what day the calendar shows, we will remain steadfast in the effort to raise the public profile of sarcoma and to advocate on behalf of the sarcoma patients and their families.  But for Rare Disease Day 2016, we were proud to join with advocates around the world who are championing for unmet needs of so many patients. Together, we made – and will continue to make – our voices heard.