We know you want to help, but know this first!
We love that you are so willing to help when called upon but please be very cautious about completing surveys or providing your personal information to pharmaceutical companies, researchers, public relations firms, marketing representatives, or other entities who may contact you through Inspire or social media, or even meet you at a WDA conference. These people may promise you money or other things that never occur or are not true. Recently, we have become aware of such people contacting WD patients directly with surveys or requests for interviews. The WDA will be issuing a written statement to pharmaceutical companies that may need patient information indicating that we will help those who can document a legitimate need for such information and that they will protect any patient information they collect. That means we will help companies to promote legitimate patient surveys, or we will tell patients about clinical studies. Hopefully, that should eliminate the need for them to hire strangers to stalk you on Facebook, Inspire and even at our conferences. So, if you are approached by someone asking you to respond to a patient survey or be interviewed, and you haven’t heard anything about that particular effort from the WDA, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. before responding to them.
The WDA spends a lot of time researching and talking to pharmaceutical companies. We treat them with courtesy if they treat us with courtesy and respect our patients. We know who is new on the scene and who is about to start clinical trials. We do whatever we can to advance new treatments and research for you.
You all know that there have been many complaints about the high cost of drugs or insurance companies that won’t cover the prescription costs. A flurry of pharmaceutical companies has jumped into possible development of Wilson Disease treatments because they are aware of the profits that can be made. They are businesses and not philanthropists, so their first priority is to their business and shareholders. Some are more ethical than others. Others are so new that sometimes they are hiring marketing companies to do research even though these marketers do not have any background in the disease at all. WDA will always announce legitimate clinical trials and surveys on our website, Facebook and in emails. If you have any questions about any entity asking you for information you should contact us and we will verify them.
