Parent of child with rare 'butterfly skin' disorder demands UK government increase research funding
A mother in Bedfordshire is campaigning for increased government funding for junctional epidermolysis bullosa, a rare genetic condition that leaves infants with skin as fragile as glass. Her six-month-old son, Ralph, was diagnosed days after birth with severe blistering and missing skin on his hands and feet. While doctors at Great Ormond Street Hospital taught the parents how to manage the condition, there is currently no cure. The mother has launched a petition that gathered 10,000 signatures, prompting a response from the Department of Health and Social Care, which cited existing funding of £1.075 million over five years. Despite this, advocates argue that rare conditions are often overlooked in research priorities, and families must tirelessly campaign for basic care improvements.
