Autosomal dominant polycystic kidney disease
Organizations
Are there good support groups for autosomal dominant polycystic kidney disease?
In the United States, there is only one organization solely dedicated to finding treatments and a cure for polycystic kidney disease. This is the PKD Foundation. It has over 60 chapters. There are organizations that provide resources and information on specific symptoms of polycystic kidney disease. For example, the National Kidney Foundation has information on polycystic kidney disease, kidney transplants, dialysis and other kidney-related issues.
References
- The PKD Foundation website.
- The National Kidney Foundation website.
More Organizations Content
Where do I find other people with autosomal dominant polycystic kidney disease?
Where do I find other people with autosomal dominant polycystic kidney disease?
Support groups can put you in contact with other people or families that have autosomal dominant polycystic kidney disease (ADPKD). The PKD Foundation is the only organization in the United States dedicated to finding treatments and cures for polycystic kidney disease. They promote research, advocacy, support and awareness throughout the country and provide direct services to local communities. There are 60 different chapters.
In the United Kingdom, there is the PKD Charity. They support people with the disorder and their families. They raise awareness and fund research.
There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.
The National Kidney Foundation has information on polycystic kidney disease, kidney transplants, dialysis and other kidney-related issues.
References
- Harris PC, Torres VE. Polycystic Kidney Disease, Autosomal Dominant. GeneReviews website. Accessed Jan 20, 2017. https://www.ncbi.nlm.nih.gov/books/NBK1246/
- Autosomal Dominant Polycystic Kidney Disease. The National Organization for Rare Diseases website. Accessed Jan 20, 2016. https://rarediseases.org/rare-diseases/autosomal-dominant-polycystic-kidney-disease/
