Spring 2008 - International Waldenstrom's Macroglobulinemia ...

President's Corner, cont. from page 4
Celebrating the Successes of the Orphan Drug Act
The Orphan Drug Act has brought hope to the more than 25 million Americans who currently have one of 7,000 rare diseases
or conditions. More than 300 treatments have been approved by FDA in the 25 years since this legislation went into effect.
In the decade before the Act was passed, only 10 treatments had been developed for rare diseases.
The term “orphan drug” refers to a drug or biologic, such as a vaccine or blood product, that treats a rare disease or condition.
A disease is rare if fewer than 200,000 people in the United States have it. This makes a diagnosis of Waldenstrom’s
macroglobulinemia one of the extremely rare cancers.
Like every other drug, orphan drugs must go through the FDA marketing approval process and be evaluated for safety and
effectiveness for their intended use. However, there are certain short-cuts available for rare diseases and certain financial
incentives available to those who will research and develop a drug approved for a rare disease. To date, more than 1,700
drugs and biologics have been designated as orphan drugs. However, there is not a single FDA-approved drug for our
disease. Until there is, we will be treated with FDA-approved drugs for other lymphomas or myeloma. The solution lies
in continuing to encourage and support WM research and to consider the clinical trials that become available seeking WM
patients for their studies.
Two New Resources from NCI
The National Cancer Institute is pleased to announce the availability of two resources: a DVD, Understanding Cancer
Clinical Trials, and a booklet, Taking Part in Cancer Treatment Research Studies. These items incorporate and replace older
materials.
To place orders call 1-800-4-CANCER or go to www.cancer.gov and search ‘NCI Publications Locator’
PAGE 16
IWMF Fundraising Initiatives
As the Board continues planning for enhanced services which include developing a revised and updated web site and
expanding the number of research projects, we seek one million dollars annually to support these services and research
projects. To achieve this goal we plan to hire a part-time fundraiser to solicit major gifts, as many comparable organizations
have done to meet the competitive challenges of raising funds. Although IWMF has been largely member-supported in the
past, we aim to attract gifts from foundations and other non-member sources where possible. The status of our fundraising
efforts will be reported at the IWMF Educational Forum in May and in the following issue of the Torch for those who cannot
attend the Forum.
Stay Well,
Judith
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