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Genetic Alliance UK
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News
Launch of The UK RARE DISEASES FRAMEWORK
We are recruiting: Policy Analyst
New project – Building Rare Resilience
SCOTTISH INVOLVEMENT PANEL
Research opportunity
We are recruiting: Director of Fundraising
APPG on Rare, Genetic and Undiagnosed Conditions – Impact of Covid-19
NICE Methods Review Consultation launched
NICE topic selection consultation
Cell and Gene Therapy Engagement Workshops
New research shows young people are capable of making informed decisions about whole genome sequencing
We are recruiting: Communications Intern
A discussion of the new UK genomics strategy
Genetic Alliance UK features in the New Scientist
Posters from Eurpean Conference on Rare Diseases and Orphan Products
The start of our Timothy Syndrome journey
We are recruiting: Director of Fundraising
Penelope’s Dravet Journey
The Rare reality of Covid-19 (July 2020)
Complete our Patient Experience survey
Our new partnership with The MedicAlert Foundation
Eurordis alert: critical care guidelines during COVID-19 pandemic
GENETIC ALLIANCE UK APPOINTS NEW CHAIR
ALL PARTY PARLIAMENTARY GROUP – RARE DISEASE DAY 2020
Major measures to protect people at highest risk from Coronavirus
NICE: COVID-19 rapid guideline
CONCORD Study Workshops – Recruiting Now
Health Awareness – Rare Diseases 2020
Newborn screening petition for review launched
Update on Cell and Gene Therapy Workshops
Cross Party Group for Rare, Genetic and Undiagnosed Conditions – Action for Access
Pledge for Patients – What’s next?
Cell and gene therapy workshops
Pledge for Patients – The Results!
Pledge for Patients – More Sign-Ups Than Ever Before
Pledge for Patients
All Party Parliamentary Group – Action for Access Launch
Action for Access
BARONESS BLACKWOOD SEEKS YOUR VIEWS ON LIVING WITH A RARE DISEASE
All Party Parliamentary Group – Newborn Screening Report Launch
Have your say on care coordination
Call for New Trustee Nominations – 2019
Endorse our newborn screening patient charter
Building Rare Communities (Autumn 2019)
Whole genome sequencing and the NHS
Your experiences of accessing rare disease medicines
New local mental health service commitment from NHS England
Your views on access to rare disease medicines
Rare disease Minister announces National Genomics Healthcare Strategy
Update on the PPRS: What’s changed (besides the name)?
European Reference Networks Save Lives
Support Genetic Alliance UK this Christmas
Genomics England sequences the 100,000th genome
Member benefit: increasing your research capacity
Donate while you shop with Amazon Smile
Support Genetic Alliance UK on #GivingTuesday
New Code on Genetic Testing and Insurance
OUR RESPONSE: DEVELOPING A LONG TERM PLAN FOR THE NHS
Annual Conference 2018: Another Successful Conference
Introducing: member exclusive website features
NHS GENOMIC MEDICINE SERVICE LAUNCH
WEBINAR: IMPACT OF A NO DEAL BREXIT ON HEALTH AND SOCIAL CARE
NOTICE OF ANNUAL GENERAL MEETING
Solve-RD: a European project looking at diagnosing the undiagnosed
EXPERIENCES OF FAMILIES WITH A RARE ENDOCRINE DISORDER
NEW RESEARCH: HOW CARE SHOULD BE COORDINATED FOR RARE DISEASES
RARE RESOURCES SCOTLAND: TEST THE TOOLKIT
ALL PARTY PARLIAMENTARY GROUP MEETING ON EUROPEAN REFERENCE NETWORKS
TELL YOUR CHARITY’S STORY
DATA PROTECTION BILL: AMENDMENT FOR PATIENT ORGANISATIONS
TELL US ABOUT YOUR EXPERIENCE OF MEDICINE SHORTAGES
ALL PARTY PARLIAMENTARY GROUP MEETING ON EUROPEAN REFERENCE NETWORKS
CONSULTATION ON EXPANSION OF PERSONAL HEALTH BUDGETS
OUR RESPONSE: ORGAN DONATION IN ENGLAND AND NORTHERN IRELAND
UK RARE DISEASES POLICY BOARD PUBLISHES SECOND REPORT
We are recruiting: Policy Officer
We are recruiting: Trust Fundraising Officer
SOLVING THE UNSOLVED RARE DISEASES: A EUROPEAN COLLABORATION
AMBASSADOR WINS EURORDIS LIFETIME ACHIEVEMENT AWARD
OUR RESPONSE TO NHS ENGLAND: PRIORITISATION ON SPECIALISED TREATMENTS
We are recruiting: SWAN UK Information Event Intern
NEWBORN SCREENING: QUICKER DIAGNOSES FOR GENETIC CONDITIONS
Does the Government’s response to the Accelerated Access Review say enough?
What should be researched for your rare disease?
HELP US IMPROVE YOUR MEMBERSHIP EXPERIENCE
UPSKILLING OUR MEMBERS: ANOTHER SUCCESSFUL ANNUAL CONFERENCE
Understanding Genome Editing – Report launched
NOTICE OF ANNUAL GENERAL MEETING
UPSKILLING OUR MEMBERS: CONFERENCE 2017
We are hiring: Public Affairs Assistant
We are hiring: Communications Officer
We are recruiting new trustees
Genome editing up close in the lab
Help to set up the Cross Party Group on Rare, Genetic and Undiagnosed Conditions
Genetic Alliance UK announces new role for Alastair Kent
Letter to Jeremy Hunt MP
We’re hiring: Director of Fundraising and Business Development
Job advert: Public Affairs Intern
Changes to the HST programme
Dynamic consent – what’s that?
We’re hiring: Research Officer
Genetic Alliance UK appoints new CEO
Review of IPFR process in Wales published
Access to medicines in Scotland
Funding treatments for rare conditions
Another step closer to mitochondrial replacement therapy
NHS England must improve its process for commissioning specialised treatments
Report launch ‘Genome editing : the patient perspective’
BREXIT: IMPACT ON UNIVERSITIES AND SCIENTIFIC RESEARCH
Research success at Genetic Alliance UK
Successful Partnerships conference 2016
Could you be our next Executive Director?
ABORTION (DISABILITY EQUALITY) BILL debate summary
We’re hiring: HR and Governance Officer
The future of the European Medicines Agency (EMA)
Answering questions about a rare genetic disease
Genetic Alliance UK launch the Hidden Costs Feasibility Study Report
Help develop the Welsh strategy for genomics and precision medicine
High court decision on NHS England’s power to fund PrEP
The Caldicott Review
Statement on the vote to leave the European Union
What is the real cost of your rare disease?
Exhibit at our conference
Join the genomics conversation
MPs support children with undiagnosed conditions
Tell NHS England how to decide which specialised services to fund
Help us produce the information you need
Genome SeqWeek 2016
Raising awareness of rare disease in Wales
Photography exhibition raises awareness of rare diseases
A toolbox to help patients get involved in medicines development
We’re helping patients form support networks
Rare Disease UK launch second patient experiences report
Second Annual Patient Day for Inherited Eye Disease
The UK National Screening Committee conference
What’s on the Horizon for Orphan and Ultra-Orphan Conditions?
Cancer and genomics – have your say!
Organ donation is changing in Wales!
Drug Repurposing and Rare Diseases
What is a Centre of Excellence?
Accelerated Access Review team release interim report
Petitions Committee Launch Event – Update
Specialist Nursing in Scotland – we need your views!
Launch of Rare Disease Implementation Plan for Northern Ireland
October Meeting of the Cross Party Group on Rare Diseases
Research for health – how is funding changing in the UK?
Our survey on the uses of new gene editing technologies
Centre for Scottish Public Policy Dinner
Centre for Scottish Public Policy Dinner
New Data Sharing Rule
First meeting of the Welsh Rare Disease Implementation Group
Tuberous Sclerosis Complex Patient Day 2015
Behçet’s in a Day
Research findings for the 100,000 Genomes Project
Neuro-enhancement: Responsible Research and Innovation
Review of the Individual Patient Funding Request Process
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