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New Volunteer opportunity
16/04/2021
We are looking for a volunteer patient /patient representative to consult on home therapy research and analysis

PRESS RELEASE: GARDIAN REGISTRY LAUNCH
14/04/2021
The IGA and Kantar Health announce today the launch of the disease registry GARDIAN

PRESS RELEASE: GARDIAN REGISTRY LAUNCH
13/04/2021
PRESS RELEASE: GARDIAN REGISTRY LAUNCH

Become an IGA Volunteer
17/03/2021
Become an IGA Volunteer

February 2021 newsletter
08/03/2021
February 2021 newsletter

Gaucher disease booklet
22/02/2021
Gaucher disease booklet

PR001 in development by Prevail Therapeutics
04/02/2021
PR001 in development by Prevail Therapeutics

January 2021 newsletter
19/01/2021
January 2021 newsletter

Gene Therapy Focus Group
14/01/2021
Gene Therapy Focus Group

Vaccination program for COVID-19 in patients with Gaucher disease
14/01/2021
Vaccination program for COVID-19 in patients with Gaucher disease

A Charitable Access Program for patients with lysosomal storage disorders in underserved communities worldwide
08/01/2021
A Charitable Access Program for patients with lysosomal storage disorders in underserved communities worldwide

A Charitable Access Program for patients with lysosomal storage disorders in underserved communities worldwide
08/01/2021
A Charitable Access Program for patients with lysosomal storage disorders in underserved communities worldwide

December newsletter and office opening hours
08/12/2020
December newsletter and office opening hours

December newsletter and office opening hours
08/12/2020
December newsletter and office opening hours

WATCH NOW: Digital health technology webinar
11/11/2020
WATCH NOW: Digital health technology webinar

WATCH NOW: Digital health technology webinar
11/11/2020
WATCH NOW: Digital health technology webinar

IGA updates its Strategic Plan
10/11/2020
IGA updates its Strategic Plan

IGA updates its Strategic Plan
10/11/2020
IGA updates its Strategic Plan

WATCH NOW: New born screening webinar
04/11/2020
WATCH NOW: New born screening webinar

WATCH NOW: New born screening webinar
04/11/2020
WATCH NOW: New born screening webinar

IGA is granted Charity status
29/10/2020
IGA is granted Charity status

IGA is granted Charity status
29/10/2020
IGA is granted Charity status

Developing digital endpoints for the Gaucher community
15/10/2020
Developing digital endpoints for the Gaucher community

Developing digital endpoints for the Gaucher community
15/10/2020
Developing digital endpoints for the Gaucher community

AVAILABLE TO WATCH NOW: AAV-based gene therapy and Prevail Therapeutic's approach for neuronopathic Gaucher diseases & Parkinson's disease with a GBA mutation
15/10/2020
AVAILABLE TO WATCH NOW: AAV-based gene therapy and Prevail Therapeutic's approach for neuronopathic Gaucher diseases & Parkinson's disease with a GBA mutation

AVAILABLE TO WATCH NOW: AAV-based gene therapy and Prevail Therapeutic's approach for neuronopathic Gaucher diseases & Parkinson's disease with a GBA mutation
15/10/2020
AVAILABLE TO WATCH NOW: AAV-based gene therapy and Prevail Therapeutic's approach for neuronopathic Gaucher diseases & Parkinson's disease with a GBA mutation

Encouraging the voice of the patient in a new trial looking at in utero treatment for nGD at University of California San Francisco
13/10/2020
Encouraging the voice of the patient in a new trial looking at in utero treatment for nGD at University of California San Francisco

Encouraging the voice of the patient in a new trial looking at in utero treatment for nGD at University of California San Francisco
13/10/2020
Encouraging the voice of the patient in a new trial looking at in utero treatment for nGD at University of California San Francisco

AVAILABLE TO WATCH NOW: Ex vivo gene therapy for Type 1 Gaucher disease
05/10/2020
AVAILABLE TO WATCH NOW: Ex vivo gene therapy for Type 1 Gaucher disease

AVAILABLE TO WATCH NOW: Ex vivo gene therapy for Type 1 Gaucher disease
05/10/2020
AVAILABLE TO WATCH NOW: Ex vivo gene therapy for Type 1 Gaucher disease

AVAILABLE TO WATCH NOW: IGD Home Therapy webinar
05/10/2020
AVAILABLE TO WATCH NOW: IGD Home Therapy webinar

AVAILABLE TO WATCH NOW: IGD Home Therapy webinar
05/10/2020
AVAILABLE TO WATCH NOW: IGD Home Therapy webinar

MEMBERS REGISTER NOW for the EWGGD ECongress on 12 & 13 October
02/10/2020
MEMBERS REGISTER NOW for the EWGGD ECongress on 12 & 13 October

MEMBERS REGISTER NOW for the EWGGD ECongress on 12 & 13 October
02/10/2020
MEMBERS REGISTER NOW for the EWGGD ECongress on 12 & 13 October

AVAILABLE TO WATCH NOW - Educational webinar: EWGGD GD1 guidelines
17/09/2020
AVAILABLE TO WATCH NOW - Educational webinar: EWGGD GD1 guidelines

AVAILABLE TO WATCH NOW - Educational webinar: EWGGD GD1 guidelines
17/09/2020
AVAILABLE TO WATCH NOW - Educational webinar: EWGGD GD1 guidelines

AVAILABLE TO WATCH NOW - Educational webinar: Gaucher & Parkinson's disease
17/09/2020
AVAILABLE TO WATCH NOW - Educational webinar: Gaucher & Parkinson's disease

AVAILABLE TO WATCH NOW - Educational webinar: Gaucher & Parkinson's disease
17/09/2020
AVAILABLE TO WATCH NOW - Educational webinar: Gaucher & Parkinson's disease

A letter from Anne-Grethe Lauridsen
08/09/2020
A letter from Anne-Grethe Lauridsen

A letter from Anne-Grethe Lauridsen
08/09/2020
A letter from Anne-Grethe Lauridsen

Online events - Autumn programme
06/08/2020
Online events - Autumn programme

Online events - Autumn programme
06/08/2020
Online events - Autumn programme

Educational webinars
31/07/2020
Educational webinars

Educational webinars
31/07/2020
Educational webinars

Home therapy with enzyme replacement therapy for Gaucher disease: a short statement from the European Working Group on Gaucher Disease (EWGGD)
30/07/2020
Home therapy with enzyme replacement therapy for Gaucher disease: a short statement from the European Working Group on Gaucher Disease (EWGGD)

Home therapy with enzyme replacement therapy for Gaucher disease: a short statement from the European Working Group on Gaucher Disease (EWGGD)
30/07/2020
Home therapy with enzyme replacement therapy for Gaucher disease: a short statement from the European Working Group on Gaucher Disease (EWGGD)

IGD Home Therapy Photo Competition
22/07/2020
IGD Home Therapy Photo Competition

AVROBIO Announces New Patients Dosed in Gaucher Disease and Cystinosis Clinical Trials
06/07/2020
AVROBIO Announces New Patients Dosed in Gaucher Disease and Cystinosis Clinical Trials

Orphazyme phase 2 study of arimoclomol in Gaucher disease
24/06/2020
Orphazyme phase 2 study of arimoclomol in Gaucher disease

IGA and CENTOGENE Team Up to Ensure myLSDapp Provides the Highest Level of Patient Data Protection
15/06/2020
IGA and CENTOGENE Team Up to Ensure myLSDapp Provides the Highest Level of Patient Data Protection

COVID-19: IGA and European GD Network Gaucher Research Survey
29/05/2020
COVID-19: IGA and European GD Network Gaucher Research Survey

Minutes from IGA's Biennial General Meeting
29/05/2020
Minutes from IGA's Biennial General Meeting

The IGA initiates a global discussion on home therapy for Gaucher patients
14/05/2020
The IGA initiates a global discussion on home therapy for Gaucher patients

AVROBIO to Collaborate with Saladax Biomedical
11/05/2020
AVROBIO to Collaborate with Saladax Biomedical

COVID19 & home treatment
28/04/2020
COVID19 & home treatment

Notes from the EWGGD webinar on 1 April
14/04/2020
Notes from the EWGGD webinar on 1 April

Results of the IGA's Board Election
14/04/2020
Results of the IGA's Board Election

The IGA has co-authored 'The Definition of Neuronopathic Gaucher disease'
07/04/2020
The IGA has co-authored 'The Definition of Neuronopathic Gaucher disease'

IGA co-authors a scientific paper titled 'The road to biosimilars in rare diseases – ongoing lessons from Gaucher disease
06/04/2020
IGA co-authors a scientific paper titled 'The road to biosimilars in rare diseases – ongoing lessons from Gaucher disease

COVID-19: A statement from the EWGGD
31/03/2020
COVID-19: A statement from the EWGGD

Covid-19 - keeping in touch
30/03/2020
Covid-19 - keeping in touch

An update from the ORPHAZYME Advocacy Team
30/03/2020
An update from the ORPHAZYME Advocacy Team

An update from the TAKEDA Advocacy team
30/03/2020
An update from the TAKEDA Advocacy team

An update from the AVROBIO advocacy team
25/03/2020
An update from the AVROBIO advocacy team

IGA's membership grows to 57 member associations
23/03/2020
IGA's membership grows to 57 member associations

COVID-19 : Supporting our members
20/03/2020
COVID-19 : Supporting our members

March 2020 newsletter
18/03/2020
March 2020 newsletter

A message regarding the COVID-19 pandemic
18/03/2020
A message regarding the COVID-19 pandemic

IGA response to COVID-19: attending meetings
16/03/2020
IGA response to COVID-19: attending meetings

Good news sharing - charitable access
13/03/2020
Good news sharing - charitable access

IGA neuronopathic Gaucher Disease (nGD) Global Registry: patient community phase I final report
12/03/2020
IGA neuronopathic Gaucher Disease (nGD) Global Registry: patient community phase I final report

Postponement of IGA Biennial Meeting in response to concerns over COVID-19
10/03/2020
Postponement of IGA Biennial Meeting in response to concerns over COVID-19

Would you like to join the IGA's board of directors?
25/02/2020
Would you like to join the IGA's board of directors?

Kantar partnership announcement: Facebook Live session
05/02/2020
Kantar partnership announcement: Facebook Live session

14th European Working Group on Gaucher Disease Congress
04/02/2020
14th European Working Group on Gaucher Disease Congress

International Gaucher Alliance and Kantar Partnership announcement
03/02/2020
International Gaucher Alliance and Kantar Partnership announcement

IGA's Membership Grows to 56 Member Associations From 54 Countries
23/01/2020
IGA's Membership Grows to 56 Member Associations From 54 Countries

AVROBIO Announces Clinical and Regulatory Progress for Gaucher Disease Program
15/01/2020
AVROBIO Announces Clinical and Regulatory Progress for Gaucher Disease Program

PR001 Administered to International Type 2 Gaucher Disease Patient Via Compassionate Use Pathway
10/01/2020
PR001 Administered to International Type 2 Gaucher Disease Patient Via Compassionate Use Pathway

Prevail Therapeutics is recruiting patients for PROPEL, a clinical trial testing an investigational gene therapy called PR001 to treat Parkinson’s disease in people with GBA mutations
08/01/2020
Prevail Therapeutics is recruiting patients for PROPEL, a clinical trial testing an investigational gene therapy called PR001 to treat Parkinson’s disease in people with GBA mutations

December 2019 newsletter
17/12/2019
December 2019 newsletter

IGA's membership grows to 55 member associations from 54 countries
12/12/2019
IGA's membership grows to 55 member associations from 54 countries

November 2019 newsletter
28/11/2019
November 2019 newsletter

IGA appoints a new co-opted board member
30/10/2019
IGA appoints a new co-opted board member

October 2019 newsletter
24/10/2019
October 2019 newsletter

Children from India receiving ERT
11/10/2019
Children from India receiving ERT

IGA advocates to get treatment to a young child in Kenya - letter of thanks
10/10/2019
IGA advocates to get treatment to a young child in Kenya - letter of thanks

Understanding the impact of being diagnosed with a comorbidity
10/10/2019
Understanding the impact of being diagnosed with a comorbidity

Happy International Gaucher Day
01/10/2019
Happy International Gaucher Day

September 2019 newsletter
26/09/2019
September 2019 newsletter

Regional Managers visit BP Koirala Hospital in Dharan, Nepal
11/09/2019
Regional Managers visit BP Koirala Hospital in Dharan, Nepal

Over 53 paediatricians attend event hosted by IGA in Kathmandu
10/09/2019
Over 53 paediatricians attend event hosted by IGA in Kathmandu

Regional Managers organise LSD patient meeting in Kathmandu
09/09/2019
Regional Managers organise LSD patient meeting in Kathmandu

Regional Managers organise medical programme in Nepal
06/09/2019
Regional Managers organise medical programme in Nepal

Orphazyme complete enrolment in Phase II clinical trial
30/08/2019
Orphazyme complete enrolment in Phase II clinical trial

August 2019 newsletter
29/08/2019
August 2019 newsletter

IGA expands its global reach to Central America
07/08/2019
IGA expands its global reach to Central America

Sanofi Genzyme provide ERT to three Sudanese children through their Charitable Access Programme
06/08/2019
Sanofi Genzyme provide ERT to three Sudanese children through their Charitable Access Programme

Six year old Tanzanian child gets treatment
06/08/2019
Six year old Tanzanian child gets treatment

New Croatian Gaucher Association joins the IGA
22/07/2019
New Croatian Gaucher Association joins the IGA

IGD Press Release
17/07/2019
IGD Press Release

nGD poster presentation at the EWGGD
08/07/2019
nGD poster presentation at the EWGGD

Jeremy Manuel is the IGA's rare star for IGD2019
04/07/2019
Jeremy Manuel is the IGA's rare star for IGD2019

July Newsletter (IGD)
04/07/2019
July Newsletter (IGD)

Brazil to join the IGA
26/06/2019
Brazil to join the IGA

June newsletter
24/06/2019
June newsletter

ORDER YOUR #IGD2019 TATTOOS - MEMBERS ONLY
04/06/2019
ORDER YOUR #IGD2019 TATTOOS - MEMBERS ONLY

NOMINATE YOUR RARE STAR FOR #IGD2019
04/06/2019
NOMINATE YOUR RARE STAR FOR #IGD2019

International Gaucher Day 2019 #IGD2019
31/05/2019
International Gaucher Day 2019 #IGD2019

May newsletter
28/05/2019
May newsletter

April newsletter
25/04/2019
April newsletter

AVROBIO explore gene therapy as a potential treatment for Gaucher disease
10/04/2019
AVROBIO explore gene therapy as a potential treatment for Gaucher disease

IGA appoints a new co-opted member to its board
09/04/2019
IGA appoints a new co-opted member to its board

March newsletter
26/03/2019
March newsletter

Election of new Chair and Vice-Chair
06/03/2019
Election of new Chair and Vice-Chair

February newsletter
28/02/2019
February newsletter

Pascal Niemeyer resigns as IGA Chairman and Director
13/02/2019
Pascal Niemeyer resigns as IGA Chairman and Director

Australia & New Zealand to join the IGA
12/02/2019
Australia & New Zealand to join the IGA

Looking for Volunteers
22/01/2019
Looking for Volunteers

January 2019 newsletter
22/01/2019
January 2019 newsletter

Global Patient Registry for nGD
14/01/2019
Global Patient Registry for nGD

December newsletter
18/12/2018
December newsletter

Mongolia to join the IGA
10/12/2018
Mongolia to join the IGA

November newsletter
30/11/2018
November newsletter

Minutes from the EGA's Biennial Members Meeting
21/11/2018
Minutes from the EGA's Biennial Members Meeting

October newsletter
01/11/2018
October newsletter

EWGGD 2019 'Save the Date'
24/10/2018
EWGGD 2019 'Save the Date'

The EGA becomes the IGA
14/10/2018
The EGA becomes the IGA

#IGD2018 #rarestars videos
02/10/2018
#IGD2018 #rarestars videos

September newsletter
24/09/2018
September newsletter

Turkey and Kazakhstan to join the EGA
11/09/2018
Turkey and Kazakhstan to join the EGA

August Newsletter
12/08/2018
August Newsletter

Biennial Members Meeting – 15 & 16 October 2018
04/07/2018
Biennial Members Meeting – 15 & 16 October 2018

Results of EGA 2018/2020 Election
27/06/2018
Results of EGA 2018/2020 Election

Morocco to join the EGA
21/06/2018
Morocco to join the EGA

GDPR Changes. Tell us how you want to be contacted.
30/04/2018
GDPR Changes. Tell us how you want to be contacted.

Pakistan to join the EGA
22/04/2018
Pakistan to join the EGA

EGA Board Membership Opportunities
10/04/2018
EGA Board Membership Opportunities

Advocacy training grant
10/04/2018
Advocacy training grant

Important Changes to Data Protection.
07/02/2018
Important Changes to Data Protection.

Rare Disease Day Video 2018
30/01/2018
Rare Disease Day Video 2018

Rare Disease Day 2018 28 February
15/01/2018
Rare Disease Day 2018 28 February

Seasons Greetings and Office Opening Hours
19/12/2017
Seasons Greetings and Office Opening Hours

International Gaucher Day 2017. A great success.
03/10/2017
International Gaucher Day 2017. A great success.

A further Inspiring #IGD2017 tale for you to enjoy.
27/09/2017
A further Inspiring #IGD2017 tale for you to enjoy.

3rd IGD 2017 story for you to enjoy!
22/09/2017
3rd IGD 2017 story for you to enjoy!

2nd Inspiring story for IGD 2017 published
19/09/2017
2nd Inspiring story for IGD 2017 published

IGD2017
12/09/2017
IGD2017

Go with gaucher
20/07/2017
Go with gaucher

Clinical Trial for Gaucher Disease Type 3
22/02/2017
Clinical Trial for Gaucher Disease Type 3

Seasons Greetings/Office opening hours
16/12/2016
Seasons Greetings/Office opening hours

Botswana to join the EGA
29/11/2016
Botswana to join the EGA

Go With Gaucher, taking forward the next generation: how to involve young people to create a new generation of patient advocates
03/11/2016
Go With Gaucher, taking forward the next generation: how to involve young people to create a new generation of patient advocates

Your opinion about an app to report side-effects and receive safety information
07/09/2016
Your opinion about an app to report side-effects and receive safety information

A new Korean ERT 'Abcertin' - Important Information for doctors treating Gaucher patients
30/08/2016
A new Korean ERT 'Abcertin' - Important Information for doctors treating Gaucher patients

Spotlight on Gaucher 2016 Campaign
28/08/2016
Spotlight on Gaucher 2016 Campaign

Change to the constitution: Members Vote paves the way to the EGA becoming global
18/07/2016
Change to the constitution: Members Vote paves the way to the EGA becoming global

EGA announces new chairman
18/07/2016
EGA announces new chairman

Dr Roscoe Brady
20/06/2016
Dr Roscoe Brady

Guatemala and Japan to join the EGA
13/04/2016
Guatemala and Japan to join the EGA

EGA GOES TO SOUTH AFRICA
13/04/2016
EGA GOES TO SOUTH AFRICA

Launch of the Official Website of the 12th EWGGD Meeting In Zaragoza, Spain
17/03/2016
Launch of the Official Website of the 12th EWGGD Meeting In Zaragoza, Spain

Shire marks 30th Anniversary with Innovative Global Program to benefit children with Rare Diseases
17/02/2016
Shire marks 30th Anniversary with Innovative Global Program to benefit children with Rare Diseases

China to join the EGA
10/02/2016
China to join the EGA

The Patient Group Handbook: A Practical Guide for Research and Drug Development
11/01/2016
The Patient Group Handbook: A Practical Guide for Research and Drug Development

The Psychosocial and Neurocognitive Impacts of Gaucher Disease, Type 1 on Pediatric and Young Adult Patients
23/11/2015
The Psychosocial and Neurocognitive Impacts of Gaucher Disease, Type 1 on Pediatric and Young Adult Patients

Launch of the 'Spotlight on Gaucher Film Contest'
15/07/2015
Launch of the 'Spotlight on Gaucher Film Contest'

UK Gauchers Association Granted a Positive Opinion For Orphan Designation For Gene Therapy For Gaucher Disease
27/02/2015
UK Gauchers Association Granted a Positive Opinion For Orphan Designation For Gene Therapy For Gaucher Disease

Watch the Official Rare Disease Day 2015 Video!
17/02/2015
Watch the Official Rare Disease Day 2015 Video!

European Commission Grants Marketing Authorization for Cerdelga (eliglustat), Genzyme`s oral therapy for Gaucher Disease Type 1
23/01/2015
European Commission Grants Marketing Authorization for Cerdelga (eliglustat), Genzyme`s oral therapy for Gaucher Disease Type 1

European CHMP Adopts Positive Opinion for Genzyme's Cerdelga (eliglustat) Capsules
23/11/2014
European CHMP Adopts Positive Opinion for Genzyme's Cerdelga (eliglustat) Capsules

Genzyme Announces Launch of `Expression of Hope III` Program to Build Awareness of Lysosomal Storage Disorders Through Works of Art
16/09/2014
Genzyme Announces Launch of `Expression of Hope III` Program to Build Awareness of Lysosomal Storage Disorders Through Works of Art

FDA Approval of Pediatric Indication for ELELYSO (taliglucerase alfa)
28/08/2014
FDA Approval of Pediatric Indication for ELELYSO (taliglucerase alfa)

FDA Approves Genzyme's Cerdelga (eliglustat) Capsules
20/08/2014
FDA Approves Genzyme's Cerdelga (eliglustat) Capsules

Joint proposal to facilitate clinical investigation of new medicines for Gaucher disease in children
17/05/2014
Joint proposal to facilitate clinical investigation of new medicines for Gaucher disease in children

FDA Grants Priority Review for Cerdelga (Eliglustat)
16/12/2013
FDA Grants Priority Review for Cerdelga (Eliglustat)

Ega becomes full member of EURORDIS
28/11/2013
Ega becomes full member of EURORDIS

Luxembourg to join the EGA
27/11/2013
Luxembourg to join the EGA

Moldova to join the EGA as 40th member
19/09/2013
Moldova to join the EGA as 40th member

6th nGD Family Conference, 8-10.11.2013 in Reading, UK.
02/07/2013
6th nGD Family Conference, 8-10.11.2013 in Reading, UK.

Croatia to join the EGA
18/06/2013
Croatia to join the EGA

Paraguay to join the EGA
11/06/2013
Paraguay to join the EGA

Report from regional patient meeting in Sarajevo, Bosnia & Herzegovina
20/04/2013
Report from regional patient meeting in Sarajevo, Bosnia & Herzegovina

Canada to join the EGA
26/03/2013
Canada to join the EGA

Alert for Gaucher Patients and Families regarding Zavesca Getz Product
14/12/2012
Alert for Gaucher Patients and Families regarding Zavesca Getz Product

EC denies Taliglucerase (Elelyso) market approval for Type 1 GD
06/11/2012
EC denies Taliglucerase (Elelyso) market approval for Type 1 GD

Genzyme Phase 3 Study of Eliglustat Meets Primary Endpoint
18/10/2012
Genzyme Phase 3 Study of Eliglustat Meets Primary Endpoint

Market approval of Elelyso by the Israeli Ministry of Health
03/10/2012
Market approval of Elelyso by the Israeli Ministry of Health

India to join the EGA
27/09/2012
India to join the EGA

Mexico to join the EGA
24/05/2012
Mexico to join the EGA

Bosnia & Herzegovina to join EGA
03/05/2012
Bosnia & Herzegovina to join EGA

FDA approved Elelyso (taliglucerase alfa)
01/05/2012
FDA approved Elelyso (taliglucerase alfa)

Macedonia and Switzerland to join EGA
19/04/2012
Macedonia and Switzerland to join EGA

Humanitarian Aid (March 2012)
26/03/2012
Humanitarian Aid (March 2012)

Shire Announces European Approval of Manufacturing Facility for VPRIV
22/02/2012
Shire Announces European Approval of Manufacturing Facility for VPRIV

Press release - Genzyme: Four-Year Data from Phase 2 Trial ...
09/02/2012
Press release - Genzyme: Four-Year Data from Phase 2 Trial ...

Press release: Protalix Announces New Clinical Data on Taliglucerase Alfa
09/02/2012
Press release: Protalix Announces New Clinical Data on Taliglucerase Alfa

EGA is now officially eligible to be involved in the acitivities of the EMA
21/12/2011
EGA is now officially eligible to be involved in the acitivities of the EMA

1st Regional Patient Meeting in Slovenia
21/11/2011
1st Regional Patient Meeting in Slovenia

New EGA Website launched
01/11/2011
New EGA Website launched

Cerezyme Emergency Treatment Program (CETP)
04/01/2011
Cerezyme Emergency Treatment Program (CETP)