We are delighted to welcome Genetic Alliance UK, as the new source for our Rare Disease, Genetic and Undiagnosed columns from 2015.
Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. It is an alliance of over 180 patient organisations – including SNJ. Genetic Alliance UK has two long-running initiatives; Rare Disease UK and SWAN UK.
Rare Disease UK is a campaign to implement the UK Strategy for Rare Diseases and works with national bodies and patient groups on improving the lives of people living with rare conditions in the UK.
SWAN (Syndromes Without a Name) UK is an initiative supporting families with children who have undiagnosed conditions. They have a lively membership and a great community spirit!
Genetic Alliance UK has been instrumental in forming a new All Party Parliamentary Group (APPG) on Rare Disease in the Houses of Parliament.
There will be a range of writers of our Genetic Alliance UK column, depending on the story.[/su_column]
- 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 »
- 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 »
- The mum whose photography project is focusing on children with rare diseaseWhen your child has a very rare condition it's hard not only to find specialists and the right treatment but…Continue reading »
- Our new Rare Disease columnist asks you to help get MPs interested in genetic conditionsTania's note: We're delighted to introduce Genetic Alliance UK as our new columnist for rare disease, genetic and undiagnosed conditions. …Continue reading »
