House of Commons London SW1A 0AA
Dear George Kerevan,
All party parliamentary group on rare, genetic and undiagnosed conditions.
I am writing to you as my MP to ask you to join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions. Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. The vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. Families like ours frequently experience delays in gaining an accurate diagnosis for their or their loved ones condition and can struggle to access appropriate care and support. My son Reuben has a rare genetic condition that doctors have so far been unable to identify and he is currently on the Deciphering De…