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."

The KDA Family

First and foremost, the KDA is a Family

We came together because we had a common bond

Every day we live with Kennedy's Disease

We stay together because we are now friends with a common goal

We all seek a treatment or cure


 Our family continues to grow


The KDA family has grown over the last seventeen years.  As of February, 2017, 1,429 people in 51 countries have registered with the KDA. Of those registered: 

  • 613 men with the defective gene

  • 181 women that are carriers

  • 331 family members and friends of someone living with Kennedy's Disease

  • 186 researchers and doctors