TOWN HALL MEETING

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• How can opportunities be created for orphan diseases/rare cancers to get together?  Could DCLG facilitate a teleconference with NCI scientists and advocates?  Set up a listserv?

NCI does not have one office or division focused on rare cancers.  Research on rare cancers is spread throughout the Institute.  This makes bringing advocates together to discuss this topic unlikely and difficult.  Many small conferences and workshops are held that focus on identifying gaps in knowledge and opportunities for future research.

However, the Office of Rare Diseases (ORD) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH).  On November 6, 2002, the President established the Office in statute (Public Law 107-280, the Rare Diseases Act of 2002).  A rare disease (also called an orphan disease) is a disease or condition that affects fewer than 200,000 persons in the United States.  An estimated 25 million people in the United States have such a disease, and based on this definition, many forms of cancer are considered rare.

The goals of ORD are to stimulate, support, and coordinate research on rare diseases in response to the needs of patients with one of the more than 6,000 rare diseases now known. To leverage its resources, stimulate rare disease research, and foster collaboration, ORD works with NIH Institutes and Centers to support:

1. A program that makes grants to establish a network for rare disease research, with a component to train rare disease investigators.
2. An intramural center for patients with undiagnosed rare conditions, and programs to stimulate clinical research on rare diseases and to train researchers interested in rare diseases.
3. A program to support scientific conferences that stimulate research where little exists, where progress has stalled, or in response to scientific opportunities.
4. Regional workshops to assist patient support groups in becoming partners with NIH, better understanding its research programs, and gaining better access to NIH research opportunities.
5. A center and other dissemination mechanisms to supply reliable and valid information to the public, researchers, and health care providers, including various databases to provide access on the Web and the ORD Web site.
6. A number of ancillary activities that contribute to furthering research on rare diseases.

For more information on ORD, please view
http://rarediseases.info.nih.gov/html/resources/about_ord.html.

ORD also issues an annual report describing NIH’s research on these diseases.  This report can be found at http://rarediseases.info.nih.gov/html/resources/rep_pubs.html.

For information on rare cancers, please contact the National Cancer Institute’s Cancer Information Service (CIS) toll free at (800) 4–CANCER.

The National Organization on Rare Diseases also offers several services and programs for those suffering from such diseases.  More information can be found at www.rarediseases.org.

Here are a few more links:
http://rarediseases.info.nih.gov/
www.genome.gov/10000409
http://rarediseases.info.nih.gov/html/resources/info_cntr.html
http://rarediseases.info.nih.gov/html/resources/news_conf.html

Below are links to proceedings of a previous NCI-specific workshop on rare cancers:

2nd NCI Epidemiology Leadership Workshop:  Understudied Rare Cancers Boston, Mass.  September 11–13, 2005

http://epi.grants.cancer.gov/Conference2/summary.html

Panel Discussion:  Rare Cancer Advocates and Survivors:  The Few and Far Between

http://epi.grants.cancer.gov/Conference2/summary.html#F1

Session Chair:  Julia H. Rowland, Ph.D.
Director, Office of Cancer Survivorship, DCCPS, NCI

Advocate Panelists:

• Douglas Bank
  President and Editor
  Testicular Cancer Resource Center
• Richard N. Boyajian, R.N., M.S.
  Lance Armstrong Foundation Adult Survivorship Clinic
  Perini Family Survivors Center
  Dana-Farber Cancer Institute
• Cary Zahrbock
  National Coalition for Cancer Survivorship

In this discussion, Dr. Rowland asked panelists to respond to a series of questions about the role of epidemiology in the life of cancer survivors and members of the public who have never had cancer.

Additional information on rare cancers is available through the following links.

Unusual Cancers of Childhood (PDQ) Treatment:
www.cancer.gov/cancertopics/pdq/treatment/unusual-cancers-childhood.

Other Rare Childhood Cancer:  www.cancer.gov/cancertopics/pdq/treatment/unusual-cancers-childhood/Patient/page6.

Lab-On-A-Chip Device Isolates Rare Cancer Cells in Minutes:
http://nano.cancer.gov/news_center/nanotech_news_2005-10-24b.asp.

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