Tag: NHS

A total of 5 posts are filed under NHS
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15-Year-Old Boy with Dense Deposit Disease Looks to NHS for Help
The family of a teenager with an extremely rare condition that may kill him within five years is begging the NHS to fund a drug which could… Continue Reading
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Greg Mulholland MP: Drugs for Ultra-Rare Diseases
Today I am leading a Westminster Hall debate on access to drugs for ultra-rare diseases. It is a matter I have campaigned on for the last… Continue Reading
UK Genetic Disorders Leadership Symposium
Genetic Disorders UK and Global Genes Collaborate on the First Event for Leaders of Rare Genetic Disorder Charities and Support Groups
Global Genes, a leading rare disease patient advocacy organization based in the USA, has partnered with Genetic Disorders UK (GDUK), the UK… Continue Reading
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Global Genes Partners with Genetic Disorders UK to Empower Individuals and Families affected by Rare Genetic Disorders Globally
There is great flux in all aspects of the lives of families affected by a rare genetic disorders in the UK. The NHS is undergoing major… Continue Reading
Specialist care
UK Rare Disease Patients Need Integrated Care from Specialists and Local Teams
Earlier this month, senior NHS official Dr Martin McShane raised the pressing issue of how to improve and sustain primary care for the… Continue Reading