You Are Not Alone
Those who actually exhibit symptoms of Kennedy's Disease need support and understanding, as do those who love them. Many issues may need to be addressed that others who do not live with Kennedy's Disease may not understand or know how to help answer. In our community, people living with Kennedy’s Disease have offered to help. Below you will find ways to connect with others living with Kennedy's Disease all over the world. These individuals have made themselves available for those seeking help, guidance and support. Together, there is much knowledge to be shared, and experience has been the teacher for all of us.
If you have unanswered questions or need support, please Contact the KDA.
Men's KD Support Group Via Zoom
Our support system includes monthly Zoom support calls. Generally, the group calls are held via Zoom on the 2nd Saturday of the month. For more information and to be sent a link to join these calls, please contact us and let us know by clicking here.
KD Carrier Support Group
As a carrier you are NOT “just a carrier”. KD Carriers face many issues both emotional AND physical. KDA has a Zoom group that meets monthly where carriers can share their stories and support one another. Being part of this group has given many women a sense of community and hope, use our contact us form to ask questions, for comments and to request a zoom link to the KD Carriers group meetings.
Below are two links that you will find helpful:
https://facebook.com/groups/1445085168876329 (Carrier group on Facebook, you will have to sign up)
https://rememberthegirls.org (Advocacy group and much information for x linked carriers.)
KDA Facebook Page
The KDA is on Facebook. Check us out and follow us! Find our page by clicking here.
You should never have to feel alone with our Support Network of friends who are ready and willing to help. Our KDA Forum provides an opportunity to learn from others, ask questions, share information, and build relationships. You can access and view the forum material without registering but you will need to register for the forum to ask or respond to questions. To Access the Forum. click here.
The KDA held their first annual annual conference in 2001 and has held conferences every year to bring men, woman and researchers together to share and learn about living with Kennedy's Disease. To see upcoming and past conference information, click here.
Support in Other Countries
Kennedy's Disease support groups have been formed in Australia, Great Britain, Canada, Japan and Russia. Information to connect with these groups is below.
Great Britain: KD-UK
KD-UK was registered in March 2015 as a non-profit in the United Kingdom. We are based in Dorchester, Dorset, UK and are run by volunteers, friends and sufferers of Kennedy's Disease. We raise funds to help support vital KD research at University College in London. We also want to raise much needed awareness of this disease. Both of these two aims are being achieved and we are so proud of all the support we have had to date.
Team Great Britain
- Team Great Britain Facebook Page
- Great Britain Kennedy's Disease Forum (Page down to Great Britain section)
- Recommended Doctors
Kennedy’s Disease Downunder
Below are some services and associations available for our brothers and sisters to the north.
The Government of Canada offers a variety of services and financial benefits to assist people with disabilities and their families. Service Canada has compiled a list to help you find benefits that may be right for you. To find a Service Canada office near you, follow this link: Service Canada Locator