The Polycystic Kidney Disease Charity

The Polycystic Kidney Disease Charity aims to:

• Provide information, advice and support to patients and families affected by polycystic kidney disease (PKD).
• Raise funds for research into both determining the causes of and discovering possible treatments for polycystic kidney disease.
• Raise awareness of PKD, providing information about PKD to patients, the public, the medical community and the media.

In order to achieve these objectives they are:

• Publishing patient information booklets for PKD patients and their families.
• Producing factsheets about specific problems/aspects of PKD, renal and extrarenal.
• Setting up a national PKD support group. Initially this will operate largely via post and telephone with occasional meetings. However, as the charity grows this will encompass the set up of several local groups with more frequent meetings. These meetings will provide a forum for individuals to share experiences, exchange information and an opportunity to become involved in both fundraising and raising awareness of PKD. Meetings will be structured around specific PKD-related topics, with guest speakers whenever possible.
• Raising funds via covenants, legacies, donations from patients and their contacts and from the public, plus organising fundraising events either nationally or locally via support groups.
• Producing a regular newsletter (initially half-yearly). This will contain information about PKD, research updates, details of support group contacts and activities, details of fundraising initiatives, a question and answer problem page section and a "contacts" page to enable patients and their families to establish communication with each other.

 
Checked: December 2006