HD feature on Rare Disease Day
How people diagnosed with rare illnesses including Huntington's Disease face a nightmare ordeal in Ireland - Independent.ie
"Ireland and Scotland have a roughly similar sized population and mix of urban and rural areas but care for people with Huntington’s disease could not be more different,"
"In Scotland support is predicated on multi-disciplinary support, delivered by ten regional teams, each with a clinical lead, specialist nurse, specialist youth worker and financial advisor and each linked to a wider network of agencies designed to provide care from diagnosis until the end of life for the roughly one thousand people who have HD in Scotland."
John Eden, Former CEO Scottish Huntington's Association