- The high costs of living with a disability, especially if it’s rareI don’t need to tell regular readers of this blog that dealing with the symptoms of the condition that affects…Continue reading »
- Who’s using your family’s health data and how secure is it?Beth McCleverty is the columnist today from Genetic Alliance UK Data, from many angles, has been somewhere near the top…Continue reading »
- Rare Disease Day: Hear our voice to help meet our needsMonday 29th February 2016 is quite aptly named Rare Disease Day - as a leap year it's the rarest day…Continue reading »
- The Rare Reality: An insight into the patient and family experience of living with a rare diseaseSpecialised help and services for children and adults with rare or undiagnosed conditions has always been hard to find -…Continue reading »