News

Regional Managers organise LSD patient meeting in Kathmandu

9 September 2019

This weekend, our regional managers Suyog Sathe and Shashank Tyagi continued their medical programme in Nepal with Dr Ashok Vellodi, visiting Thamel in Kathmandu for a patient meeting.

Two families identified with Lysosomal Storage Disorders were …

read more »

Regional Managers organise medical programme in Nepal

6 September 2019

The aim of our regional manager programme is to grow our global reach to provide a strong voice for Gaucher patients worldwide.

This week Our regional managers responsible for South Asia, Suyog Sathe and Shashank Tyagi have organised a medical …

read more »

Orphazyme complete enrolment in Phase II clinical trial

30 August 2019

Orphazme have just announced their interim report detailing their activities and achievements for the first half of 2019 and we’re thrilled about one of their milestones: they have completed enrolment in their Phase II Gaucher clinical trial …

read more »

August 2019 newsletter

29 August 2019

Read all the latest news from the IGA here

IGA expands its global reach to Central America

7 August 2019

As we continue to grow our global reach to provide a strong voice for Gaucher patients worldwide Patricia Lucki joins our team of regional managers to support the Central America region. 

Patricia was born in Argentina and has lived in …

read more »

Sanofi Genzyme provide ERT to three Sudanese children through their Charitable Access Programme

7 August 2019

CEO, Tanya Collin-Histed writes; The IGA works closely alongside the pharmaceutical companies that have charitable access programmes to ensure no-one gets left behind.

Earlier this year several Gaucher patients applied for charitable treatment …

read more »

Six year old Tanzanian child gets treatment

6 August 2019

We love sharing Good News stories... the collaboration of Takeda and Direct Relief means that a child in Tanzania is now getting treatment for Gaucher disease through their charitable access programme.

…

read more »

New Croatian Gaucher Association joins the IGA

22 July 2019

We are pleased to announce that the Croatian Gaucher Association has now joined the IGA, taking our membership up to 52 member associations from 52 countries worldwide. (The Croatian Alliance for Rare Diseases remains a member of the IGA.)

read more »

IGD Press Release

17 July 2019

Please click here to download a copy of the offical press release for International Gaucher Day on 1 October.  For more information, please conytact Jo Higgs on jo@gaucheralliance.org.

nGD poster presentation at the EWGGD

8 July 2019

Last week during the EWGGD in Clermont-Ferrand, our CEO Tanya Collin-Histed presented the poster on the IGA's global disease registry for neuronopathic Gaucher disease.

Working in partnership with Aparito, the IGA acted as a lead instigator, …

read more »