Type | Name | Description | Download |
---|---|---|---|
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 |
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 |
IGA materials | Regional Manager Application Form | Regional Manager Application Form | Download |
Scientific papers | Investigation of a dysmorphic facial phenotype in patients with Gaucher disease types 2 and 3 | This study investigated whether a facial recognition platform could distinguish between photos of patients with GD2 and GD3 and discriminate between them and photos of healthy controls. | Download |
IGA materials | Gaucher Disease info book in English | Gaucher Disease info book in English PDF | Download |
IGA materials | Gaucher Disease info book in Arabic | كتاب معلومات مرض جوشر بالعربية PDF | Download |
IGA materials | Gaucher Disease info book in Chinese | 中文高雪病信息书 PDF | Download |
IGA materials | Gaucher Disease info book in French | Livre d'information sur la maladie de Gaucher en français PDF | Download |
IGA materials | Gaucher Disease info book in Portuguese | Livro de informações sobre a doença de Gaucher em português PDF | Download |
IGA materials | Gaucher Disease info book in Russian | Информационная книга о болезни Гоше на русском языке PDF | Download |
IGA materials | Gaucher Disease info book in Spanish | Libro informativo sobre la enfermedad de Gaucher en español PDF | Download |
IGA materials | What being a member of the IGA can do for you (English) | What being a member of the IGA can do for you (English) Word | Download |
IGA materials | What being a member of the IGA can do for you (Arabic) | ما الذي يمكن أن يفعله لك كونك عضوًا في IGA (العربية) Word | Download |
IGA materials | What being a member of the IGA can do for you (Chinese) | 成为IGA会员能为您做什么(中文) Word | Download |
IGA materials | What being a member of the IGA can do for you (Spanish) | Qué puede hacer por ti ser miembro de la IGA (Español) Word | Download |
IGA materials | What being a member of the IGA can do for you (French) | Ce qu'être membre de l'IGA peut vous apporter (français) Word | Download |
IGA materials | What being a member of the IGA can do for you (Hebrew) | מה להיות חבר ב-IGA יכול לעשות עבורך (עברית) (Word) | Download |
IGA materials | What being a member of the IGA can do for you (Portuguese) | O que ser membro do IGA pode fazer por você (Português) Word | Download |
IGA materials | What being a member of the IGA can do for you (Russian) | Что может дать вам членство в IGA (русский) Word | Download |
IGA materials | Apply to be an IGA Board member | Application form for Board membership. | Download |
IGA materials | IGA 2021 Impact Report | Our Impact Report for 2021 | Download |
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