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Joel

Guest Blog

Joel

To celebrate World Birth Defects Day we asked the team at Public Health England to talk about the be…

There is a lot of energy and enthusiasm for involving patients in medicines development – but patien…

When living with a rare condition, it can be very easy to never meet another person with the same co…

On Tuesday 19 January 2016, our campaign Rare Disease UK launched a report looking at patient experi…

Last Friday, over 80 patients, families, patient organisations and health professionals gathered for…

On Wednesday 9 December 2015 our Policy Officer, Louise, attended the first ever UK National Screeni…

Last week our Development Officer in Wales, Emma, attended an engagement event with the Welsh Health…

Genomics is becoming an increasingly important aspect of cancer prediction, diagnosis, and treatment…

There are currently 6642 people across the UK waiting for an organ transplant – some of them will di…

Treatments for rare and genetic conditions are often few and far between, so it is important for us …

At Genetic Alliance UK we get asked this question a lot. Many of the patients we work with are not s…

Last week the Accelerated Access Review (AAR) interim report was released. We welcome the review's a…

Last week we attended the launch event for the new House of Commons Petitions Committee. The Speaker…

We are delighted to announce that last week Simon Hamilton MLA, the Northern Ireland Executive Healt…

At the recent Cross Party Group (CPG) on Rare Diseases, it was agreed that specialist nurses are ext…

On Tuesday 27 October 2015 the Cross Party Group on Rare Diseases met in the Scottish Parliament. 24…

The amount of money being put into health research, and what is funded, is changing in the UK. Accor…

We think that those most affected by new research techniques should have a say in their regulation a…

On Friday 16th October, our Development Officer in Scotland, Natalie, attended a dinner hosted by th…

From October 2015 health and adult social care professionals have a legal requirement - under the He…

The first meeting of the Welsh Rare Disease Implementation Group was held last week. The group is re…

In collaboration with the Tuberous Sclerosis Association (TSA), Genetic Alliance UK organised to bri…

Cross-Party Groups (CPG) in the Scottish Parliament provide an opportunity for Members of all partie…

The UK Platform for the European Patients‘ Academy on Therapeutic Innovation (EUPATI) met again last…

In NHS England’s most recent round of investment decisions for specialised services (published Thurs…

Last weekend, we attended an event run by SWAN UK (an initiative of Genetic Alliance UK) at Thames V…

Preimplantation genetic diagnosis (PGD) is an important tool for families affected by genetic condit…

Genetic Alliance UK, together with our initiatives SWAN UK and Rare Disease UK, are campaigning for …

I recently joined Genetic Alliance UK as the new Policy Officer. One of the first pieces of work I w…

We are glad to see that the Department of Health (DH) has published its triennial review of the Nati…

NHS England’s prioritisation framework for the commissioning of specialised services sets out the pr…

On Tuesday 14 July 2015, 94 members and other stakeholders joined us at our annual conference.

Thi…

Many of our members will be unhappy with the recent NHS prioritisation recommendations. To make sure…

Genetic Alliance UK is undertaking research to help understand the impact of parenting children affe…

On the 25th of March 2015, the final report of the Penrose Inquiry was published. The Penrose Inquir…

On Monday 15 June, to raise awareness of the debate on access to medicines for ultra-rare diseases, …

On Friday 19 June, Genetic Alliance UK met with Dr Aoife Molloy, Clinical Fellow at the National Ins…

Behçet’s in a Day is an educational event and the first of its kind in Wales to bring together patie…

Last year Genomics England commissioned Genetic Alliance UK to seek the views of patients and famili…

The Neuro-Enhancement: Responsible Research and Innovation (NERRI) project seeks to establish a soci…

In October 2013, a review of the Individual Patient Funding Request Process (IPFR) [1] was commissio…

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