Throughout my career in healthcare communications, I’ve had the opportunity to learn about several of the more than 6,000 rare diseases that, taken together, affect approximately 25 million Americans – and have often thought, “I hope no one near me is directly affected by this disease – or any disease for that matter.”
Rare diseases are those that are extremely uncommon – ones that affect less than 200,000 people in the U.S. – and often have such low prevalence that the average doctor would most likely not run into more than one case of that disease in their career, if ever. 
When I recently began working on sarcoma outreach, I again thought, “I hope no one close to me has sarcoma.” This time, my wishful thinking didn’t work. I found out not one but two people I work with have first-hand experience with sarcoma. One colleague’s father recently underwent surgery, after receiving chemotherapy, to remove a sarcoma tumor. To date, he is doing well and continues to have frequent check-ups to assess new growth. Another coworker was not quite as fortunate. Her uncle lost his battle with a rare form of sarcoma within six months of his diagnosis. As you read this post, look around and talk to your friends, relatives or coworkers. You, too, may find out that a rare disease such as sarcoma is not completely unknown to those around you.
Sarcoma is a rare cancer in adults (1 percent of all adult cancers), but rather prevalent in children (about 15 percent of all childhood cancers). Sarcoma is made up of many “subtypes” because it can arise from a variety of tissue structures (nerves, muscles, joints, bone, fat, blood vessels – these are collectively referred to as the body’s “connective tissues”). Because these tissues are found everywhere on the body, sarcomas can arise anywhere.
Every year, 12,000 new sarcoma cases are diagnosed and about 5,000 people die from sarcoma. To this end, the Sarcoma Foundation of America (SFA) raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on behalf of sarcoma patients.
How can you help the SFA raise money to fund research?
Participate On Sunday, April 25 and Monday, April 26, the Sarcoma Foundation of America will be hosting its 2010 Annual Educational Conference and Gala. The program includes:
Ask the Experts: Advances in Sarcoma Treatment and Research
At their Annual Patient Education Conference, SFA will showcase the latest sarcoma research where six world-renowned doctors will present information related to sarcoma. Additionally, the conference will feature an hour-long question and answer session for attendees. Specific topics include:
- Advances in medicine that are improving the lives of those with sarcoma, including European sarcoma drug approval and rare cancer strategies
- The future of targeted therapy advances in sarcoma pathology Osteosarcoma, Leiomyosarcoma and Ewing’s Sarcoma research.
- Click here to learn more
Sunday, April 25, 2010
11:00 AM to 3:30 PM
The Helmsley Park Lane Hotel
36 Central Park South
New York, NY 10019
8th Annual Fundraising Gala
At the Fundraising Gala, the SFA will announce the 11 grants awarded for 2010, including 10 SFA Research Grants and one American Society for Clinical Oncology Foundation Advanced Clinical Research Award worth $500,000 for future sarcoma research. The SFA has now awarded a total of 50 research grants, plus four ASCO Young Investigator Awards and two ASCO Foundation Advanced Clinical Research Awards.
Monday, April 26, 2010
6:00 PM to 10:00 PM
The Pierre
2 East 61st Street
New York, NY 10065
Join the Sarcoma Foundation of America this April 25 and 25 to help advance its mission to advocate for increased research to find new and better therapies with which to treat patients with Sarcoma.
Tags: rare disease, Research
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