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Launch of The UK RARE DISEASES FRAMEWORK

Launch of The UK RARE DISEASES FRAMEWORK

We are recruiting: Policy Analyst

We are recruiting: Policy Analyst

New project – Building Rare Resilience

New project – Building Rare Resilience

SCOTTISH INVOLVEMENT PANEL

SCOTTISH INVOLVEMENT PANEL

Research opportunity

Research opportunity

We are recruiting: Director of Fundraising

We are recruiting: Director of Fundraising

APPG on Rare, Genetic and Undiagnosed Conditions – Impact of Covid-19

APPG on Rare, Genetic and Undiagnosed Conditions – Impact of Covid-19

NICE Methods Review Consultation launched

NICE Methods Review Consultation launched

NICE topic selection consultation

NICE topic selection consultation

Cell and Gene Therapy Engagement Workshops

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

We are recruiting: Communications Intern

A discussion of the new UK genomics strategy

A discussion of the new UK genomics strategy

Genetic Alliance UK features in the New Scientist

Genetic Alliance UK features in the New Scientist

Posters from Eurpean Conference on Rare Diseases and Orphan Products

Posters from Eurpean Conference on Rare Diseases and Orphan Products

The start of our Timothy Syndrome journey

The start of our Timothy Syndrome journey

We are recruiting: Director of Fundraising

We are recruiting: Director of Fundraising

Penelope’s Dravet Journey

Penelope’s Dravet Journey

The Rare reality of Covid-19 (July 2020)

The Rare reality of Covid-19 (July 2020)

Complete our Patient Experience survey

Our new partnership with The MedicAlert Foundation

Our new partnership with The MedicAlert Foundation

Eurordis alert: critical care guidelines during COVID-19 pandemic

Eurordis alert: critical care guidelines during COVID-19 pandemic

GENETIC ALLIANCE UK APPOINTS NEW CHAIR

GENETIC ALLIANCE UK APPOINTS NEW CHAIR

ALL PARTY PARLIAMENTARY GROUP – RARE DISEASE DAY 2020

ALL PARTY PARLIAMENTARY GROUP – RARE DISEASE DAY 2020

Major measures to protect people at highest risk from Coronavirus

Major measures to protect people at highest risk from Coronavirus

NICE: COVID-19 rapid guideline

NICE: COVID-19 rapid guideline

CONCORD Study Workshops – Recruiting Now

CONCORD Study Workshops – Recruiting Now

Health Awareness – Rare Diseases 2020

Health Awareness – Rare Diseases 2020

Newborn screening petition for review launched

Newborn screening petition for review launched

Update on Cell and Gene Therapy Workshops

Update on Cell and Gene Therapy Workshops

Cross Party Group for Rare, Genetic and Undiagnosed Conditions – Action for Access

Cross Party Group for Rare, Genetic and Undiagnosed Conditions – Action for Access

Pledge for Patients – What’s next?

Pledge for Patients – What’s next?

Cell and gene therapy workshops

Cell and gene therapy workshops

Pledge for Patients – The Results!

Pledge for Patients – The Results!

Pledge for Patients – More Sign-Ups Than Ever Before

Pledge for Patients – More Sign-Ups Than Ever Before

Pledge for Patients

Pledge for Patients

All Party Parliamentary Group – Action for Access Launch

All Party Parliamentary Group – Action for Access Launch

Action for Access

Action for Access

BARONESS BLACKWOOD SEEKS YOUR VIEWS ON LIVING WITH A RARE DISEASE

BARONESS BLACKWOOD SEEKS YOUR VIEWS ON LIVING WITH A RARE DISEASE

All Party Parliamentary Group – Newborn Screening Report Launch

All Party Parliamentary Group – Newborn Screening Report Launch

Have your say on care coordination

Have your say on care coordination

Call for New Trustee Nominations – 2019

Call for New Trustee Nominations – 2019

Endorse our newborn screening patient charter

Endorse our newborn screening patient charter

Building Rare Communities (Autumn 2019)

Building Rare Communities (Autumn 2019)

Whole genome sequencing and the NHS

Whole genome sequencing and the NHS

Your experiences of accessing rare disease medicines

Your experiences of accessing rare disease medicines

New local mental health service commitment from NHS England

New local mental health service commitment from NHS England

Your views on access to rare disease medicines

Your views on access to rare disease medicines

Rare disease Minister announces National Genomics Healthcare Strategy

Rare disease Minister announces National Genomics Healthcare Strategy

Update on the PPRS: What’s changed (besides the name)?

Update on the PPRS: What’s changed (besides the name)?

European Reference Networks Save Lives

European Reference Networks Save Lives

Support Genetic Alliance UK this Christmas

Support Genetic Alliance UK this Christmas

Genomics England sequences the 100,000th genome

Genomics England sequences the 100,000th genome

Member benefit: increasing your research capacity

Member benefit: increasing your research capacity

Donate while you shop with Amazon Smile

Donate while you shop with Amazon Smile

Support Genetic Alliance UK on #GivingTuesday

Support Genetic Alliance UK on #GivingTuesday

New Code on Genetic Testing and Insurance

New Code on Genetic Testing and Insurance

OUR RESPONSE: DEVELOPING A LONG TERM PLAN FOR THE NHS

OUR RESPONSE: DEVELOPING A LONG TERM PLAN FOR THE NHS

Annual Conference 2018: Another Successful Conference

Annual Conference 2018: Another Successful Conference

Introducing: member exclusive website features

Introducing: member exclusive website features

NHS GENOMIC MEDICINE SERVICE LAUNCH

NHS GENOMIC MEDICINE SERVICE LAUNCH

WEBINAR: IMPACT OF A NO DEAL BREXIT ON HEALTH AND SOCIAL CARE

WEBINAR: IMPACT OF A NO DEAL BREXIT ON HEALTH AND SOCIAL CARE

NOTICE OF ANNUAL GENERAL MEETING

NOTICE OF ANNUAL GENERAL MEETING

Solve-RD: a European project looking at diagnosing the undiagnosed

Solve-RD: a European project looking at diagnosing the undiagnosed

EXPERIENCES OF FAMILIES WITH A RARE ENDOCRINE DISORDER

EXPERIENCES OF FAMILIES WITH A RARE ENDOCRINE DISORDER

NEW RESEARCH: HOW CARE SHOULD BE COORDINATED FOR RARE DISEASES

NEW RESEARCH: HOW CARE SHOULD BE COORDINATED FOR RARE DISEASES

RARE RESOURCES SCOTLAND: TEST THE TOOLKIT

RARE RESOURCES SCOTLAND: TEST THE TOOLKIT

ALL PARTY PARLIAMENTARY GROUP MEETING ON EUROPEAN REFERENCE NETWORKS

ALL PARTY PARLIAMENTARY GROUP MEETING ON EUROPEAN REFERENCE NETWORKS

TELL YOUR CHARITY’S STORY

TELL YOUR CHARITY’S STORY

DATA PROTECTION BILL: AMENDMENT FOR PATIENT ORGANISATIONS

DATA PROTECTION BILL: AMENDMENT FOR PATIENT ORGANISATIONS

TELL US ABOUT YOUR EXPERIENCE OF MEDICINE SHORTAGES

TELL US ABOUT YOUR EXPERIENCE OF MEDICINE SHORTAGES

ALL PARTY PARLIAMENTARY GROUP MEETING ON EUROPEAN REFERENCE NETWORKS

ALL PARTY PARLIAMENTARY GROUP MEETING ON EUROPEAN REFERENCE NETWORKS

CONSULTATION ON EXPANSION OF PERSONAL HEALTH BUDGETS

CONSULTATION ON EXPANSION OF PERSONAL HEALTH BUDGETS

OUR RESPONSE: ORGAN DONATION IN ENGLAND AND NORTHERN IRELAND

OUR RESPONSE: ORGAN DONATION IN ENGLAND AND NORTHERN IRELAND

UK RARE DISEASES POLICY BOARD PUBLISHES SECOND REPORT

UK RARE DISEASES POLICY BOARD PUBLISHES SECOND REPORT

We are recruiting: Policy Officer

We are recruiting: Policy Officer

We are recruiting: Trust Fundraising Officer

We are recruiting: Trust Fundraising Officer

SOLVING THE UNSOLVED RARE DISEASES: A EUROPEAN COLLABORATION

SOLVING THE UNSOLVED RARE DISEASES: A EUROPEAN COLLABORATION

AMBASSADOR WINS EURORDIS LIFETIME ACHIEVEMENT AWARD

AMBASSADOR WINS EURORDIS LIFETIME ACHIEVEMENT AWARD

OUR RESPONSE TO NHS ENGLAND: PRIORITISATION ON SPECIALISED TREATMENTS

OUR RESPONSE TO NHS ENGLAND: PRIORITISATION ON SPECIALISED TREATMENTS

We are recruiting: SWAN UK Information Event Intern

We are recruiting: SWAN UK Information Event Intern

NEWBORN SCREENING: QUICKER DIAGNOSES FOR GENETIC CONDITIONS

NEWBORN SCREENING: QUICKER DIAGNOSES FOR GENETIC CONDITIONS

Does the Government’s response to the Accelerated Access Review say enough?

Does the Government’s response to the Accelerated Access Review say enough?

What should be researched for your rare disease?

What should be researched for your rare disease?

HELP US IMPROVE YOUR MEMBERSHIP EXPERIENCE

HELP US IMPROVE YOUR MEMBERSHIP EXPERIENCE

UPSKILLING OUR MEMBERS: ANOTHER SUCCESSFUL ANNUAL CONFERENCE

UPSKILLING OUR MEMBERS: ANOTHER SUCCESSFUL ANNUAL CONFERENCE

Understanding Genome Editing – Report launched

Understanding Genome Editing – Report launched

NOTICE OF ANNUAL GENERAL MEETING

NOTICE OF ANNUAL GENERAL  MEETING

UPSKILLING OUR MEMBERS: CONFERENCE 2017

UPSKILLING OUR MEMBERS: CONFERENCE 2017

We are hiring: Public Affairs Assistant

We are hiring: Public Affairs Assistant

We are hiring: Communications Officer

We are hiring: Communications Officer

We are recruiting new trustees

We are recruiting new trustees

Genome editing up close in the lab

Genome editing up close in the lab

Help to set up the Cross Party Group on Rare, Genetic and Undiagnosed Conditions

Help to set up the Cross Party Group on Rare, Genetic and Undiagnosed Conditions

Genetic Alliance UK announces new role for Alastair Kent

Genetic Alliance UK announces new role for Alastair Kent

Letter to Jeremy Hunt MP

Letter to Jeremy Hunt MP

We’re hiring: Director of Fundraising and Business Development

We’re hiring: Director of Fundraising and Business Development

Job advert: Public Affairs Intern

Job advert: Public Affairs Intern

Changes to the HST programme

Changes to the HST programme

Dynamic consent – what’s that?

Dynamic consent – what’s that?

We’re hiring: Research Officer

We’re hiring: Research Officer

Genetic Alliance UK appoints new CEO

Genetic Alliance UK appoints new CEO

Review of IPFR process in Wales published

Review of IPFR process in Wales published

Access to medicines in Scotland

Access to medicines in Scotland

Funding treatments for rare conditions

Funding treatments for rare conditions

Another step closer to mitochondrial replacement therapy

Another step closer to mitochondrial replacement therapy

NHS England must improve its process for commissioning specialised treatments

NHS England must improve its process for commissioning specialised treatments

Report launch ‘Genome editing : the patient perspective’

Report launch ‘Genome editing : the patient perspective’

BREXIT: IMPACT ON UNIVERSITIES AND SCIENTIFIC RESEARCH

BREXIT: IMPACT ON UNIVERSITIES AND SCIENTIFIC RESEARCH

Research success at Genetic Alliance UK

Research success at Genetic Alliance UK

Successful Partnerships conference 2016

Successful Partnerships conference 2016

Could you be our next Executive Director?

Could you be our next Executive Director?

ABORTION (DISABILITY EQUALITY) BILL debate summary

ABORTION (DISABILITY EQUALITY) BILL debate summary

We’re hiring: HR and Governance Officer

We’re hiring: HR and Governance Officer

The future of the European Medicines Agency (EMA)

The future of the European Medicines Agency (EMA)

Answering questions about a rare genetic disease

Answering questions about a rare genetic disease

Genetic Alliance UK launch the Hidden Costs Feasibility Study Report

Genetic Alliance UK launch the Hidden Costs Feasibility Study Report

Help develop the Welsh strategy for genomics and precision medicine

Help develop the Welsh strategy for genomics and precision medicine

High court decision on NHS England’s power to fund PrEP

High court decision on NHS England’s power to fund PrEP

The Caldicott Review 

The Caldicott Review 

Statement on the vote to leave the European Union

Statement on the vote to leave the European Union

What is the real cost of your rare disease?

What is the real cost of your rare disease?

Exhibit at our conference

Exhibit at our conference

Join the genomics conversation

Join the genomics conversation

MPs support children with undiagnosed conditions

MPs support children with undiagnosed conditions

Tell NHS England how to decide which specialised services to fund

Tell NHS England how to decide which specialised services to fund

Help us produce the information you need

Help us produce the information you need

Genome SeqWeek 2016

Genome SeqWeek 2016

Raising awareness of rare disease in Wales

Raising awareness of rare disease in Wales

Photography exhibition raises awareness of rare diseases

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

Join our alliance of 200+ patient charities

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Genetic Alliance UK provides the secretariat for the following parliamentary groups on Rare, Genetic and Undiagnosed Conditions:

  • Westminster APPG
  • Scottish CPG
  • Welsh CPG

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Genetic Alliance UK registered charity numbers: 1114195 & SC039299.

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