LINK TO ONE OF OUR 57 MEMBER ASSOCIATIONS FOR LOCAL SUPPORT, ADVICE AND NEWS
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News
Covid-19 - keeping in touch
31 March 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 March 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 March 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 March 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 March 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 March 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 March 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 March 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 …IGA response to COVID-19: attending meetings
16 March 2020
In light of the current global circumstances with the Coronavirus and the ongoing daily change in cases and governments making decisions regarding their attempts to contain and reduce risks to their citizens, the IGA has taken the decision that our …
Good news sharing - charitable access
13 March 2020
Sharing some good news with our Gaucher community...
Takeda’s Medical Expert Committee (MEC) have recently approved 17 Gaucher patients from Pakistan, Sudan, Tanzania and Tunisia on to their annual LSD Charitable Access Programme (CAP).
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