Wilson Disease Association (WDA) International
The Wilson Disease Association (WDA) is a volunteer organization striving to promote the well being of patients with Wilson disease and their families and friends.
Wilson disease is a rare, genetic disorder affecting only 1 in 30,000 people. It is often very difficult to find accurate, timely information on the disease. Our web site addresses this need by offering the latest information about the disease, its cause, symptoms, and treatments. We hope you find this resource valuable in your understanding of Wilson disease.
The Wilson Disease Association funds research and facilitates and promotes the identification, education, treatment, and support of patients and other individuals affected by Wilson disease.
It is our belief that nobody need suffer from Wilson disease. Our vision is to be recognized for excellence as an international, non-profit health organization. We will: • Conduct our business in a professional manner. • Raise funds and responsibly manage our resources in order to provide and sustain high-quality program services. • Support research and clinical investigation that are in the best interest of patients and families. • Develop educational programs for healthcare professionals and patients to assure proper early diagnosis, treatment, and rehabilitation. Patient care will be accessible, affordable, and of high quality. • Foster a comfortable, supportive environment for Wilson disease patients and families. We are committed to this vision for the benefit of all affected by Wilson disease.
Patient Support Efforts
• Maintain a membership list that includes patients, their families, their friends, medical personnel, and other individuals and organizations interested in the disease • Send a regular newsletter containing information about the disease, issues of interest to the membership, and other related matters • Provide a network for written, phone, and electronic communication between affected individuals and their families • Provide referrals to physicians, other healthcare providers, and other assistive resources; facilitate consultation with Wilson disease expert physicians
Education and Outreach Efforts • Answer questions from the public about the disease • Make our membership aware of pending legislative and public policy issues pertinant to Wilson disease • Provide money to needy patients for travel, equipment and medication when necessary • Attend professional meetings, distribute educational materials, and promote media coverage to educate the public and professionals about Wilson disease
Clinical and Research Efforts
• Raise funds to support the goals of the WDA research program • Cooperate with investigators and clinicians to advance medical knowledge on the disease, and develop more accurate diagnostic methods, life-improving therapies, and ultimately a cure • Accept grant proposals on an annual basis for innovative basic, clinical, or translational research relevant to the cause or treatment of Wilson disease • Award annual grants to researchers based on the scientific merit of the proposed study and the research priorities established by the Wilson Disease Association