As a result of donations from individuals, NORD has posted a new Request for Proposals (RFP) for clinical studies of three diseases: adenoid cystic carcinoma (ACC), moyamoya syndrome, and thrombotic thrombocytopenic purpura (TTP). In each case, seed-money grants of approximately $30,000 each will be available for one-year studies related to the treatment of these diseases.

These research grants are international, and all proposals that meet the criteria are welcome. Details are posted on NORD’s Web site (www.rarediseases.org). Application forms may be downloaded from the site. To read the RFPs and/or download forms, click on the Research button at the top of the home page.

Additional information also is available from Stefanie Putkowski, RN, NORD’s Research Coordinator. To contact her, call (203) 744-0100 or write to research@rarediseases.org. The deadline for submitting abstracts and letters of intent will be Jan. 5, 2007.

NORD’s Medical Advisory Committee will review all abstracts and select the ones for which researchers will be invited to submit full proposals. Appropriate consent forms will be required for any study involving human subjects.

Adenoid cystic carcinoma (ACC) is a relatively rare form of cancer that most commonly develops in the salivary glands or other regions of the head and neck. ACC tumors are characterized by a distinctive pattern in which “nests” or cords of certain cells surround and/or infiltrate ducts or glandular structures within the affected organ. It has a history of slow growth but tends to be aggressively invasive and to infiltrate nearby lymph nodes as well as the “sheaths” or coatings surrounding nerve fibers.

Moyamoya syndrome is a progressive disorder that affects the blood vessels in the brain and interferes with the delivery of blood to the brain. Signs typically include paralysis of the feet, legs, or upper extremities. Headaches, various vision problems, and psychiatric problems may also occur. Approximately 10 percent of cases occur as the result of a genetic cause and are termed primary moyamoya syndrome. Secondary moyamoya syndrome occurs as a result of another underlying disorder, and it is important in those cases for the physician to determine the root, underlying cause.

TTP is a rare blood disease, the signs and symptoms of which may include a severe decrease in the number of blood platelets, abnormal destruction of red blood cells, and disturbances in the nervous system. Kidney dysfunction and fever are also common. The exact cause of TTP is not known, but the disorder is associated with a deficiency of an enzyme involved in blood-clotting known as the von Willebrand factor cleaving protease (also called ADAMTS13). It is believed that there is an acquired (non-inherited) form of TTP and a familial form.