About The Polycystic Kidney Disease Charity

The PKD Charity is a UK-based charity run by patients, relatives and medical and scientific advisors with longstanding interests in polycystic kidney disease (PKD).

 

PKD is the most common, life-threatening genetic disease worldwide. The dominant form (ADPKD) affects around 1 in 800 people - making it more common than cystic fibrosis, muscular dystrophy, haemophilia, Down’s syndrome and sickle cell anaemia combined. Without treatment, around 50% of people with ADPKD will have complete kidney failure by age 60. The recessive form (ARPDK) is rarer and affects infants, with up to 50% mortality at birth. Both forms of PKD are incurable.

 

The charity provides information and support to patients and families affected by PKD.  In addition, it supports research into discovering possible treatments and a cure for PKD, and seeks to raise awareness of PKD, providing information about PKD to patients, the public, the medical community and the media.

 

The PKD Charity welcomes contact from patients, their relatives and health professionals. Dedicated to the concerns of people affected by PKD, it aims to:

 

-          Publish patient information booklets for PKD patients and their families.  Further information is also available on the charity's website at www.pkdcharity.org.uk.

 

-          Produce fact sheets about specific aspects of PKD, renal and extra-renal.

 

-          Set up a national PKD support group, incorporating telephone, web, email and local meetings to provide a forum for individuals to share experiences, exchange information and become involved in both fundraising and raising awareness of PKD.

 

-          Hold an annual conference in venues around the UK with guest speakers.

 

-          Issue a regular newsletter.

 

-          Generate sufficient funds to finance both clinical and non-clinical research at every level.

Our history

The PKD charity was established in 2001 by one of the trustees, Mrs Pamela Hooley, herself a PKD patient, and Dr Anand Saggar, a consultant in clinical genetics with a special interest in PKD. Dr Saggar is the chairman of the charity’s Scientific and Research Board.

 

At the time of her diagnosis Pam found it difficult to find detailed and reliable information about the condition and was astounded to find that, in spite of the prevalence of this genetic disorder there was very little awareness of it.

 

The nearest charity and support group was in the United States, so the PKD charity was set up to address this problem. 

 

Dr Saggar had previously been involved in the management of a small local charitable fund for PKD patients and it was decided that this should be expanded to encompass the work of a support group and to operate nationally.  The fund registered as a charity and Pam and Dr Saggar have since been joined by other professionals, patients and members of families affected by PKD, also acting as trustees for the charity.

 

The charity is funded by voluntary donations.