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Awards for All Peer Support Pilot Grant Awarded

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February 2016

PKD Charity receives Awards for All Grants to Pilot 1-Year Telephone Befriending & Peer Support Project

The Big Lottery Awards for All programmes in England and Scotland have awarded the Polycystic Kidney Disease Charity two grants totalling £15,235 to further support patients, family members and carers affected by Polycystic Kidney Disease.

The Awards for All grant will be used to pilot a one-year telephone befriending and peer support project in London, the North West of England and Scotland. The programme will enable the Polycystic Kidney Disease Charity to determine the effectiveness of such a service and to learn what does and doesn’t work before committing to a national programme.

About Polycystic Kidney Disease

Polycystic Kidney Disease is a range of genetic disorders that cause renal (kidney) failure, damage to other organs and sometimes result in premature death in children and adults. There are two major forms of PKD:

ADPKD - AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE - is the world’s most common inherited kidney disease, in which fluid-filled cysts develop, multiply and grow in both kidneys. Other organs, such as the liver and brain, may be affected. Between 1 in 400 and 1 in 1000 people worldwide - about 12.5 million - have ADPKD. Over half of those affected will have kidney failure by the time they are 60 years old. Many will experience regular pain, disability and anxiety throughout life. If someone has ADPKD, there is a 1 in 2 (50 percent) likelihood that the disease will pass to each child born.

ARPKD - AUTOSOMAL RECESSIVE POLYCYSTIC KIDNEY DISEASE - is a rare disease that affects the kidneys and liver. It occurs in about one in every 20,000 live births in the UK. ARPKD is a severe disease. Sadly, about one baby in three with ARPKD dies from breathing problems during the first four weeks after birth and some will die during pregnancy. However, 8 to 9 in ten babies (80-90 per cent) who survive the first four weeks of life are still alive at five years old. Encouragingly, a good number of children now survive into adulthood and are able to live full and productive lives.

Genetic disorders like PKD happen when abnormalities or mutations occur in single genes inside human cells. Genes contain DNA, the 'building blocks' of life which contain instructions for making the proteins that are necessary for human development. When there is a genetic mutation, the proteins don't work properly or are sometimes missed. In PKD, the genetic mutations affect the kidneys primarily, but also affect the development of the liver and other organs.

Tess Harris, CEO of the PKD Charity, said: “We are delighted to have received these Big Lottery Awards for All grants. They will help us develop a programme that will deliver the support needed by patients and families living with and affected by polycystic kidney disease.”

About the Polycystic Kidney Disease Charity

The PKD Charity was established in December 2000 by patients, professionals and members of families affected by PKD to provide information, advice and support to patients and families. The PKD Charity also funds research into determining the causes of polycystic kidney disease, into discovering treatments and a cure for PKD and raises awareness of PKD, providing information to the public, the medical community and the media.

About Awards for All

big lottery pinkThe Big Lottery Fund supports the aspirations of people who want to make life better for their communities across the UK. We are responsible for giving out 40% of the money raised by the National Lottery for good causes and invest over £650 million a year in projects big and small in health, education, environment and charitable purposes. Since June 2004 we have awarded over £8 billion to projects that make a difference to people and communities in need, from early years intervention to commemorative travel funding for World War Two veterans. Since the National Lottery began in 1994, £33 billion has been raised and more than 450,000 grants awarded.

For more information:
Contact Tess Harris
This email address is being protected from spambots. You need JavaScript enabled to view it.
Tel: 020 7387 0543
To find out more about Polycystic Kidney Disease
www.pkdcharity.org

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  • Visit Ciliopathy Alliance website
  • Visit PKD International website
  • Visit EURORDIS website
  • Visit the Genetic Alliance UK website
  • Visit The Information Standard website
  • National Voices Website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website