Sarcoma Alliance Updates Directory of Nonprofit Organizations

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The Alliance also gives tips on how to find nonprofits that fit the needs of people affected by sarcoma, a rare cancer.

Arthur Beckert, executive director of the Sarcoma Alliance

Arthur Beckert, executive director of the Sarcoma Alliance

Many patients could live longer and better lives if they got the correct diagnosis and access to more effective treatment. But many don’t because doctors who lack expertise in sarcoma treat them, at least initially.

Since 2006, the nonprofit Sarcoma Alliance has maintained a directory of U.S. and international sarcoma organizations, including their mission statements, accomplishments and contact information. The 2011 directory is here.

The directory helps nonprofits cooperate and collaborate. Sarcoma patients and their families and friends also can use it to find organizations that serve their needs. People may find one nonprofit that does everything they want. Others will seek different things from different groups.

Cancer nonprofits can be divided into those that provide direct services, those that concentrate on raising money for research, and those that do both.

The Sarcoma Alliance fits into the first category. It offers guidance, education and support on its main website, with more information each month. A peer-to-peer network, live chat room, blog, Facebook page, YouTube channel and discussion board to let people support one another and share information. The Alliance also helps start sarcoma support groups, and provides financial assistance to patients seeking a second opinion from sarcoma specialists.

Although the Alliance advocates for more research, its goal is to help people right now. Many patients could live longer and better lives if they got the correct diagnosis and access to more effective treatment. But many don’t because doctors who lack expertise in sarcoma treat them, at least initially.

Of the nonprofits that fund research, some give money to particular doctors and scientists or to particular institutions. Some have medical advisory boards that review grant proposals and pick the ones they consider best. Some fund basic science while some pay for clinical trials. Some finance research on sarcoma in general while others aim at a particular subtype, such as leiomyosarcoma.

Newly diagnosed patients can get overwhelmed searching the Internet. The Alliance recommends: Take a deep breath and then start a list of the nonprofit websites you visit and what they offer. Note which ones you like and dislike and your reasons, such as: “confusing.” Keep in mind that an organization that confuses you in the beginning may make more sense later. In other words, your knowledge and needs are likely to change over time.

If you can afford donations, don’t forget the nonprofits that inform and support you. If you prefer to donate for research, are you hoping that your money will help find a cure for you? If so, you may want to look at the time it takes to bring a new drug to market and choose research that is further along. But the timeline doesn’t matter as much if you simply want to support scientific discoveries aimed at ending sarcoma one day.

Please contact the Sarcoma Alliance to add a nonprofit to the Directory of Sarcoma Patient Advocacy Organizations and Foundations or to update an existing listing.

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