Alaska, Illinois and Wisconsin Add Creutzfeldt-Jakob Disease To Their Required Reportable Conditions List
April 08, 2008 (PRLEAP.COM) Health News
Alaska, Illinois and Wisconsin have all added Creutzfeldt-Jakob disease (CJD) to their required reportable conditions list. "This is wonderful to hear", remarked Christy Brom, the director/founder of CJD Aware!, a non-profit, information organization based in New Orleans, Louisiana. "State Health Departments are on the front-lines when dealing with public health issues, such as infectious diseases. By making CJD a reportable condition, health officials can gather data that shows how often the disease occurs, monitor the trends of the disease and continue their tracking of outbreaks." added Ms. Brom. All states have reportable conditions list, but requirements for reporting diseasesvaries from state-to-state.
Since its inception in the spring of 2002, CJD Aware! continues to grow at a steady pace. The information organization has nearly tripled its database of individuals, medical professionals and educators who have contacted the organization requesting information about Creutzfeldt-Jakob disease (CJD). In addition to monitoring several state Health Departments as some revise their rules/regulations, CJD Aware! is also continuing their annual 'CJD Awareness Week' campaign.
"This campaign will go on until we have proclamations from the governors of all 50 states," remarked Sandy Rouse, a CJD Aware! volunteer. "We have volunteers ready to assist us this year with Virginia, Oklahoma, South Carolina and Florida," added Ms. Rouse. CJD Aware! has seen a surge in requests for their information packets, as well as a recent request from a dementia clinic for all their available information.
As CJD Aware! begins a very busy and growth-oriented time, they find it fitting that this year, 2008, is the 25th anniversary of the Orphan Drug Act. Signed on Janury 4, 1983 by President Ronald Reagan, this legislation brings new hope to the 25 million Americans who suffer from rare diseases. The staff and volunteers continue with CJD Aware's! mission of "sharing information to find a cure" in each packet that is mailed out, each email that is responded to and each phone call that is answered. "In our 6 years of existence, it is extremely gratifying for CJD Aware! to feel that we have helped families understand and deal with this very rare and devastating disease" says Ms. Brom.