Beth McCleverty, Genetic Alliance UK

Act now to protect the NHS funding of rare disease medicines like Ava’s

Columnists, Health, Rare Disease, special needs

Act now to protect the NHS funding of rare disease medicines like Ava’s

By Beth McCleverty, Genetic Alliance UK April 3, 2017 April 3, 2017

Having a child with rare disease can mean that you are given very little information about their condition. Parent carers find themselves becoming the expert, rather than the professionals who are …

The high costs of living with a disability, especially if it’s rare

Columnists, Disability, Rare Disease, special needs

The high costs of living with a disability, especially if it’s rare

By Beth McCleverty, Genetic Alliance UK November 4, 2016 November 4, 2016

I don’t need to tell regular readers of this blog that dealing with the symptoms of the condition that affects you or your child is often only half the battle. …

Who’s using your family’s health data and how secure is it?

Columnists, Health, Rare Disease, special needs

Who’s using your family’s health data and how secure is it?

By Beth McCleverty, Genetic Alliance UK July 29, 2016 July 31, 2016

Beth McCleverty is the columnist today from Genetic Alliance UK Data, from many angles, has been somewhere near the top of the agenda for a while now. Whether the issue …

Special Needs Jungle