News & Events

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The Caldicott Review 

News

The Caldicott Review 

Statement on the vote to leave the European Union

News

Statement on the vote to leave the European Union

Successful Partnerships: Conference 2016

Events

Successful Partnerships: Conference 2016

Introducing the LPLD Alliance

Guest Blog

Introducing the LPLD Alliance

What is the real cost of your rare disease?

News

What is the real cost of your rare disease?

Exhibit at our conference

News

Exhibit at our conference

Join the genomics conversation

News

Join the genomics conversation

MPs support children with undiagnosed conditions

News

MPs support children with undiagnosed conditions

Joel

Guest Blog

Joel

Tell NHS England how to decide which specialised services to fund

News

Tell NHS England how to decide which specialised services to fund

Help us produce the information you need

News

Help us produce the information you need

Genome SeqWeek 2016

News

Genome SeqWeek 2016

What will NCARDRS do for rare disease patients?

Guest Blog

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

Photography exhibition raises awareness of rare diseases

News

Photography exhibition raises awareness of rare diseases

Raising awareness of rare disease in Wales

News

Raising awareness of rare disease in Wales

A toolbox to help patients get involved in medicines development

News

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

We‘re helping patients form support networks

News

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

Rare Disease UK launch second patient experiences report

News

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

Second Annual Patient Day for Inherited Eye Disease

News

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

The UK National Screening Committee conference

News

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

What's on the Horizon for Orphan and Ultra-Orphan Conditions?

News

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

Cancer and genomics - have your say!

News

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

Organ donation is changing in Wales!

News

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

Drug Repurposing and Rare Diseases

Guest Blog

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

What is a Centre of Excellence?

News

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

Accelerated Access Review team release interim report

News

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

Petitions Committee Launch Event - Update

News

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

Launch of Rare Disease Implementation Plan for Northern Ireland

News

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

Specialist Nursing in Scotland - we need your views!

News

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

October Meeting of the Cross Party Group on Rare Diseases

News

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

Research for health – how is funding changing in the UK?

News

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

Our survey on the uses of new gene editing technologies

News

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

Centre for Scottish Public Policy Dinner

News

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

New Data Sharing Rule

News

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

First meeting of the Welsh Rare Disease Implementation Group

News

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

Tuberous Sclerosis Complex Patient Day 2015

News

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

Cross Party Group on Rare Diseases

News

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

EUPATI UK platform meets with National Liaison Team

News

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

NSPKU meeting with NHS England

News

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

Giving undiagnosed patients a voice in Parliament

News

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

Genetic Alliance UK have supported 200 condition licences for PGD

News

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

Why we need an APPG on rare, genetic and undiagnosed conditions

News

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

Update from this week’s Scottish Medicines Consortium meeting

News

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

Our thoughts on the Department of Health’s Triennial Review of NICE

News

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

What's unknown about NHS England’s prioritisation framework

News

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

Safeguarding health data

News

Safeguarding health data

Annual conference 2015

News

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

Thi…

NHS England’s new prioritisation framework

News

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

Exploring the impact of Adrenal Insufficiency - survey now live!

News

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

NHS England’s 2015/16 commissioning decisions published

News

Today, NHS England’s Clinical Priorities Advisory Group (CPAG) has released its prioritisation recom…

The Penrose Inquiry into acquired infection from blood products

News

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

EU Data Protection Regulation

News

EU Data Protection Regulation

Twitter debate on access to medicines for ultra-rare diseases

News

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

Shared decision making and the rare disease community

News

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

Update from the Scottish Cross Party Group on Rare Diseases

News

Update from the Scottish Cross Party Group on Rare Diseases

Behçet’s in a Day

News

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

Research findings for the 100,000 Genomes Project

News

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

Neuro-enhancement: Responsible Research and Innovation

News

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

Review of the Individual Patient Funding Request Process

News

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

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