Nouvelles & Événements

Children from India receiving ERT

11 octobre 2019

We have always pledged to help any Gaucher patient that asks us for help wherever they live in the world, therefore advocating for charitable treatment has always been and will be our priority.

We are so pleased to be able to share with you (with …

read more »

IGA advocates to get treatment to a young child in Kenya - letter of thanks

11 octobre 2019

We received a lovely letter from Hassan Suraw, a father of a Gaucher patient in Kenya:

“ I officially received sad news from Head of Hematology that my daughter is having Gaucher Disease last year 2018, while she was 15 months old, and it …

read more »

Understanding the impact of being diagnosed with a comorbidity

10 octobre 2019

As part of its strategic imperatives, one of the goals of the IGA is to have a better understanding of the impact of being diagnosed with a comorbidity such as Parkinson’s Disease or Multiple Myeloma. The long-term objective is to put into …

read more »

Happy International Gaucher Day

1 octobre 2019

Introducing our 2019 #RareStars - this year we celebrate those who have made a difference in the lives of our patients and/or their families with a montage for 1 October, followed by individual framed photos of each nomination throughout …

read more »

September 2019 newsletter

26 septembre 2019

The IGA's latest newsletter is available to download and read here

Regional Managers visit BP Koirala Hospital in Dharan, Nepal

11 septembre 2019

On Sunday, our regional managers and Dr Ashok Vellodi continued their medical programme in Nepal, visiting the BP Koirala Hospital in Dharan with Dr Nisha Keshry Bhatta.

Special thanks to Drs Jyoti and Prakash for helping to arrange this event …

read more »

Over 53 paediatricians attend event hosted by IGA in Kathmandu

10 septembre 2019

On Saturday, 53 paediatricians from all over Kathmandu attended an evening event hosted by the IGA with Nepal Paediatric Society (NEPAS) and Maharajagunj Medicine Campus and Tribhuvan University Teaching Hospital.

The programme focussed on LSDs …

read more »

Regional Managers organise LSD patient meeting in Kathmandu

9 septembre 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 septembre 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 août 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 »