The staff and other members will tell you how important it is for you to register yourselves or your families with the National Registry for Ichthyosis and Related Disorders. Enrolling in the Registry offers you a number of personal benefits as well as benefits to the whole ‘ichthyosis community.’ Some of those benefits include: confirmation or clarification of your diagnosis; genetic testing and counseling; and promoting the understanding of ichthyosis, and how it affects individuals with the disease, in the medical and research communities.

The Registry’s connection to the medical and research communities is particularly important right now. Why? Because this year our government made a big commitment to rare disease research with the drafting of two critically important laws that are companion legislation to The Rare Diseases Act of 2001, and with the passage of the Loan Repayment Program.

The Rare Diseases Act of 2002 will create an official Office of Rare Diseases at the National Institutes of Health, which will promote and coordinate research on rare disorders. The Rare Diseases Orphan Product Development Act of 2002 will provide millions of dollars a year for clinical trials of new drugs, diagnostic tools, medical devices and medical foods for rare diseases. Congress has already passed the Loan Repayment Program, which will award money to doctors to repay their student loans if they commit to participating in clinical research. These pieces of legislation are critically important to people with rare diseases who are waiting for new treatments and cures for their conditions. Passage of these laws will create an environment where, at the highest level of our government, research into rare diseases is considered important. The National Registry for Ichthyosis and Related Disorders stands ready for this focus on rare diseases research with an extensive database of information from individuals affected by the ichthyoses and how they are affected, and a list of well-characterized individuals willing to consider being research participants. Please consider joining the Registry and helping to provide a valuable resource to investigators interested in studying and treating people with ichthyosis. To contact the Registry, call 1-800-595-1265, or click here for email or visit their website by clicking here.