L’EGA è un gruppo ombrello pan europeo che rappresenta gli interessi dei pazienti Gaucher e quelli dei gruppi di pazienti Gaucher non a scopo di lucro in tutta Europa e altrove nel mondo.
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Notizie
IGA co-authors a scientific paper titled 'The road to biosimilars in rare diseases – ongoing lessons from Gaucher disease
6 aprile 2020
As biosimilars become a 'hot topic' in the rare disease world, the IGA started to educate its members about them two years ago with a presentation from Prof Dingermann on what biosimilars are at our biennial members meeting in Riga, 2018. We …
COVID-19: A statement from the EWGGD
31 marzo 2020
A statement from the EWGGD to our Gaucher community...
"We hope that you are all well and managing in this time of unprecedented upheaval and uncertainty. We are sure that you as patients with Gaucher disease and clinicians caring for …
Covid-19 - keeping in touch
31 marzo 2020
Dear members
As the COVID 19 pandemic continues, a lot of families in our community are facing different challenges and issues. This is a challenge but we all need to find strength in each other to adapt to this inevitable change that came …
An update from the ORPHAZYME Advocacy Team
30 marzo 2020
A message from Orphazyme to the global community of patients, family members and healthcare providers impacted by the corona virus pandemic (COVID-19):
This is an uncertain and difficult time for us all. As we face these challenges, …An update from the TAKEDA Advocacy team
30 marzo 2020
Statement concerning the impact of SARS-CoV-2 (COVID-19) on the supply of treatment for persons with lysosomal storage disorders (LSDs), including Hunter syndrome (Mucopolysaccharidosis type II or MPS II), type 1 Gaucher disease, Fabry disease and …
An update from the AVROBIO advocacy team
25 marzo 2020
"Given the healthcare resources required to manage COVID-19, a number of clinical trial sites worldwide have temporarily postponed elective procedures, including clinical trial activities. While we remain committed to moving our clinical …
IGA's membership grows to 57 member associations
23 marzo 2020
We’re delighted to announce that Asociaţia Gaucher România/Romanian Gaucher Association has joined the IGA, bringing our membership up to 57 member associations from 54 countries:
Fundatia Romana Pentru Bolile …
COVID-19 : Supporting our members
20 marzo 2020
In these difficult times with the COVID 19, we are aware that different countries have different measures and recommendations to deal with the situation and support the health system and their citizens.
The IGA board members and our CEO are …
March 2020 newsletter
18 marzo 2020
In our latest newsletter you can read the latest update on our global nGD patient registry, a report from the WORLDsymposium and how collaborative working is enabling patients to receive treatment through charitable access programmes. …
A message regarding the COVID-19 pandemic
18 marzo 2020
On behalf of the International Gaucher Alliance, we would like to express our support for those individuals and families already directly affected by COVID-19 around the world.
We are conscious of the stress the pandemic is causing on people …