On Wednesday, Melissa Cevallos of Health Key wrote a piece focusing on the increased visibility of rare diseases in an international consortium of health professionals.

Rare diseases are likely to get more attention now that an international consortium of patient advocacy groups and research funders has vowed to deliver 200 new therapies by 2020. For people with these diseases, such attention must seem long overdue.

Cevallos highlights the disinclination of drug companies to develop drugs for unique, rare, and endemic diseases but that is slowly changing.  In March 2011, Senator Robert Casey (D-PA) re-introduced the Creating Hope Act of 2011 to the Senate Committee on Health, Education, Labor, and Pensions. The Act is co-sponsored by Senators Scott Brown (R-MA), Sherrod Brown (D-OH), Al Franken (D-MN) and Johnny Isakson (R-GA).  The Creating Hope Act of 2011 aims to incentivize drug companies to develop new drugs for rare tropical and pediatric diseases.  The act seeks to improve the priority review voucher program which issues prizes to developers for treatment of rare/neglected diseases.

The prize is an incentive for companies to invest in new drugs and vaccines for neglected tropical diseases. A provision of the Food and Drug Administration Amendments Act (HR 3580) awards a transferable “priority review voucher” to any company that obtains approval for a treatment for a neglected tropical disease. Sponsored by Senators Sam Brownback (R-KS), and Sherrod Brown (D-OH), Al Franken (D-MN) and Johnny Isakson (R-GA), this provision adds to the market based incentives available for the development of new medicines for developing world diseases such as malaria, tuberculosis and African sleeping sickness.

In moving forward, the National Institutes of Health (NIH) have received grant money towards a research program geared towards developing drugs and curriculum for rare diseases called: NIH Therapeutics for Rare and Neglected Diseases (TRND).  This program plan to launch a series of projects in Fall 2011 however, TRND has currently launched a few pilot projects that give us a glimpse into the variety of rare diseases they will be digging into, one of which is considered one of the most common NTD—schistosomiasis.

Read the original article here.

Read about the current projects here.