| Video |
Webinar: Newborn screening |
New born screening is the process of testing new born babies for serious, but treatable, conditions, including Gaucher disease. |
Watch |
| IGA materials |
Best Practice Sharing |
Published leaflet on best practices for GD patients (2018) |
Download |
| IGA materials |
IGA's Articles of Association (2020) |
IGA official document |
Download |
| IGA materials |
IGA's Code of Practice (2019) |
Code of Practice on Relationships with the pharmaceutical industry |
Download |
| IGA materials |
IGA's Code of Practice Glossary (2018) |
An addendum to the IGA's Code of Practice |
Download |
| IGA materials |
IGA Volunteer Charter (2019) |
An IGA policy |
Download |
| IGA materials |
IGA's Strategic Plan (2021) |
IGA's updated Strategic Plan |
Download |
| IGA materials |
IGA Impact Report (2019) |
IGA's Impact Report for 2019 |
Download |
| IGA materials |
IGA's Regional Manager Programme |
Poster published at WORLD and ECRD 2020 |
Download |
| IGA materials |
nGD registry |
Poster presented at WORLD and ECRD 2020 |
Download |
| IGA materials |
Best Practice Sharing |
Poster presented at ECRD 20148 |
Download |
| Links to other useful sites |
European Patients Forum |
EPF is an umbrella organisation that works with patients’ groups in public health and health advocacy across Europe. |
Visit |
| Links to other useful sites |
EUPATI |
Check out the EUPATI website for patient expert training courses and toolkits. |
Visit |
| Links to other useful sites |
Orphanet |
Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. |
Visit |
| Video |
Webinar: Digital Health Technology |
Educational webinar focussed on the growing use of digital technology to capture patient data, empower patients to be more involved in their health journey. |
Watch |
| Video |
Webinar: AAV based Gene therapy |
Educational webinars on the latest developments in gene therapy focused on AAV-based gene therapy and Prevail Therapeutic's approach for nGDand Parkinson’s disease with a GBA mutation. |
Watch |
| Video |
Webinar: Ex vivo gene therapy for Type 1 Gaucher disease |
Educational webinars on the latest developments in gene therapy for Gaucher treatment, focused on AVROBIO's lentiviral investigational gene therapy. |
Watch |
| Video |
Webinar: IGD2020: Home Therapy |
The focus of this year's IGD campaign was home therapy, following the challenges some Gaucher patients are facing during the COVID19 pandemic. |
Watch |
| Video |
Webinar: EWGGD GD1 Clinical Guidelines |
A webinar to set the scene to explore what should be included in new international patient centric guidelines for Type 1 Gaucher disease. |
Watch |
| Video |
Webinar: Gaucher & Parkinson's disease - the early signs and risks to carriers |
A webinar exploring how researches have linked GD to a slightly increased risk of having Parkinson's disease later in life. |
Watch |
| Video |
Webinar: Home Therapy with EWGGD |
IGA initiates global discussion on home therapy for Gaucher patients |
Watch |
| Literature from patient groups |
Patient & Family Support Services (UK Gauchers Association) |
The UK Gauchers Association employs a Patient & Family Support Worker to help with any non-clinical advice and information. |
Download |
| Literature from patient groups |
GD3 transitioning to adult care booklet (UK Gauchers Association) |
This booklet was written by young adult GD3 patients to help others understand what to expect while going through transition into adult services |
Download |
| Literature from patient groups |
What is homecare (UK Gauchers Assocaition) |
Homecare is a service provided to patients to enable them to receive ERT treatment away from the hospital |
Download |
| Literature from patient groups |
Planning a family (UK Gauchers Assocaition) |
Planning a family or finding out you are pregnant can be a very exciting time - this is a resource to help think about all the things to consider |
Download |
| Literature from patient groups |
Gene therapy for GD1 (UK Gauchers Assocaition) |
A booklet written by G Massaro, SN Waddington & AA Rahim from UCL about gene therapy: the introduction of genetic material to cells of patients for therapeutic benefit |
Download |
| Literature from patient groups |
Živeti z Gaucherjevo boleznijo (Slovenian Gaucher Association) |
Living with Gaucher Disease |
Download |
| Literature from patient groups |
David Explores Gaucher disease |
An information booklet from the USA National Gaucher Foundation |
View |
| IGA materials |
Gaucher Disease Basic Information Booklet |
We have developed this booklet as a source of information for patients and their carers and to answer questions on Gaucher disease |
Download |
| Scientific papers |
The European Gaucher Alliance: a survey of member patient organisations’ activities, healthcare environments and concerns |
The survey provided a ‘snapshot’ of the situation for patients and families affected by Gaucher disease, helping the EGA direct its activities into areas of greatest need. |
View |
| Scientific papers |
The road to biosimilars in rare diseases |
Ongoing lessons from Gaucher disease |
View |
| Scientific papers |
The definition of neuronopathic Gaucher disease |
This new definition will help patients and clinicians with diagnosis and ultimately ensure that patients with nGD are able to access new medicines and the right clinical care. |
View |
| Scientific papers |
A charitable access program for patients with lysosomal storage disorders in underserved communities worldwide |
Patients in some countries face challenges accessing treatments owing to low healthcare provider (HCP) awareness and education regarding rare diseases |
View |
| Scientific papers |
Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases |
Results From the First Multi-Center European Survey |
Download |
| IGA materials |
IGA Impact Report (2020) |
IGA's Impact Report for 2020 |
Download |
| Video |
Webinar: Wellness for GD patients webinar |
Dr Seema Kanwall joined our webinar to talk about maximising your wellbeing. |
Watch |
