We know you want to help, but know this first!
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.