Leading patient groups join forces on World Kidney Day in a new drive to tackle an important yet neglected genetic kidney disease.
PKD International launches first Europe-wide steering committee to address issues affecting people with Autosomal Dominant Polycystic Kidney Disease (ADPKD).
On March 14 2013, PKD International announced the formation of a steering committee of patient groups to better represent the needs of people with Autosomal Dominant Polycystic Kidney Disease (ADPKD) across Europe. Consisting of representatives from a number of leading European organisations, the committee will join forces to implement activities to help improve the lives of people with ADPKD and raise awareness of a condition that is often over-looked in the area of common, non-communicable diseases.
It is estimated that there may be more than 700,000 people in Europe with ADPKD1, 2, a genetic systemic disorder characterised by the growth of numerous cysts in the kidneys but also in the liver, pancreas and other organs1, 3. The condition primarily causes progressive kidney enlargement, structural damage and kidney failure. Some polycystic kidneys can grow up to half a metre in length4 and weigh almost 10kg each5 (normal size is 10cm average length and 150g weight6). Half of all ADPKD patients will require dialysis or transplantation by the age of 607 and people with ADPKD account for up to 1 in 10 people on maintenance dialysis8. Pain and kidney infections are common, some patients also require liver transplants owing to massive cystic bulk9 and brain aneurysms can occur more frequently than in the general population.10 ADPKD is inherited dominantly, which means that if a parent is affected by ADPKD, there is a 1 in 2 (50%) chance their child will inherit the condition4.
“The progressive nature of ADPKD is both a physical and emotional challenge; moreover, as a hereditary condition, it places great strain on family members”, said Tess Harris, President of PKD International and CEO of the PKD Charity UK.“ There is an urgent need for more awareness amongst the public and healthcare professionals of the impact of ADPKD on families and individuals. People with ADPKD often find it difficult to tell friends, colleagues and employers about their condition, making it harder to cope with the day-to-day demands it places on them. Astonishingly, there has been zero research by European governments into treatments for ADPKD for 30 years, despite it being a well-recognised and important chronic kidney disease. Using our extensive experience and knowledge, the PKD steering committee will work in partnership to tackle the issues faced by the ADPKD community and represent their needs across Europe.”
PKD International has invited patient group representatives from Italy, Spain, Switzerland, France, Germany, the Netherlands the UK and the Nordics to sit on the steering committee. By sharing the experiences and insights from the different patient groups, the steering committee aims to ensure future ADPKD awareness raising activity is as effective and representative as possible through publicity, events and fundraising.
The PKD steering committee is supported by an unrestricted grant from Otsuka Pharmaceutical Europe Ltd.
Notes to editors
About PKD International
PKD International is a non-profit, non-governmental association (NGO) based in Geneva, Switzerland. The purpose of PKD International is to enhance the lives of those affected by all forms of polycystic kidney disease worldwide by uniting patients and medical professionals committed to ending PKD, providing opportunities to learn the latest on PKD, and supporting the most promising research and clinical trials. PKD International unites a global network of patient organisations who already fund and organise successful activities (patient support, research, conferences, awareness etc) in their home countries. For additional information on PKD International or to find out how to get involved with disease awareness activities, please contact us.
About Autosomal Recessive Polycystic Kidney Disease (ARPKD)
ARPKD is a rare inherited form of PKD, with symptoms beginning in the earliest months of life. As the genetic trait is recessive, parents who do not have PKD can have a child with the disease. If both parents carry the abnormal gene there is a 1 in 4 (25%) chance that their child will inherit the condition. If only one parent carries the abnormal gene, the baby cannot get ARPKD5.
Otsuka Pharmaceutical Europe Ltd
Otsuka Pharmaceutical Europe Ltd is a subsidiary of Otsuka Pharmaceutical Co, Ltd. (founded in 1964), a global healthcare company with the corporate philosophy: ‘Otsuka- people creating new products for better health worldwide.’ Otsuka researches, develops, manufactures and markets innovative and original products, with a focus on pharmaceutical products for the treatment of diseases and nutraceutical products for the maintenance of everyday health. Otsuka is committed to being a corporation that creates global value, adhering to the high ethical standards required of a company involved in human health and life, maintaining a dynamic corporate culture, and working in harmony with local communities and the natural environment.
Otsuka Pharmaceutical Co., Ltd. is a wholly owned subsidiary of Otsuka Holdings Co., Ltd., the holding company for the Otsuka Group. The Otsuka Group has business operations in 25 countries and regions around the world. For more information, visit www.otsuka.co.jp/en.
- Torres, VE, Harris, PC, et al. Autosomal Dominant Polycystic Kidney Disease. Lancet. 2007; 369:1287-1301.
- United Nations, Department of Economic and Social Affairs, Population Division (2007). World Population Prospects: The 2006 Revision, Highlights, Working Paper No. ESA/P/WP.202
- Patel V, Chowdhury R, et al. Advances in the pathogenesis and treatment of polycystic kidney disease. Current Opinion in Nephrology and Hypertension. 2009;18:99-106.
- NEJM: Ekser B and Rigotti P, Autosomal Dominant Polycystic Kidney Disease, New
- Polycystic Kidney Disease. Kidney and Urology. Available from: http://www.kidneyurology.org/Library/Kidney_Health/Polycystic_Kidney_Disease.php[Last accessed March 2013]
- Kang KY et al. A comparative study of methods of estimating kidney length in kidney transplantation donors. Nephrology. Dialysis. Transplantation. 2007; 22(8):2322-2327.
- Renal Resource Centre. Polycystic Kidney Disease. Available from: http://www.renalresource.com/booklets/pkd.php[last accessed March 2013]
- Christophe JL et al. Complications of autosomal dominant polycystic kidney disease in 50 haemodialysed patients. A case-control study. Nephrology. Dialysis. Transplantation 1996; 11:1271-1276.
- Chaveau D et al. Liver Involvement in Autosomal-Dominant Polycystic Kidney Disease: Therapeutic Dilemma. Journal of the American Society of Nephrology 2000; 11:1767-1775.
- Ong A, Screening for intracranial aneurysms in ADPKD. British Medical Journal 2009; 339:b3763.