Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

Information and Resources




The Kennedy’s Disease Association (KDA) has developed several programs and resources to support and make information available to individuals and their families that are directly affected by this rare neurological disorder. 



  • Our resources, programs and support include KDA Information Guides. These guides include topics such as applying for Social Security - Disability, exercise programs for those with KD, and financial planning.
  • Our KDA Newsletters sent out periodicaly include updates on research and clinical trials, personal stories and helpful information.
  • Our KDAConferences and Educational Symposiums provide a place for those of us living with Kennedy’s Disease as well as for researchers to meet and share their findings.
  • Our Facebook page provides association and personal news as well as updates and links to information of interest.
  • The Living with Kennedy’s Disease Blog has articles related to living with Kennedy’s Disease, research, and personal stories. In addition, we haved provide plenty of links and videos to relevant information and ressources related to Kennedy's Disease on the left navigation pane under the category Information and Resources.