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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COLLEGATI AD UNO DEI NOSTRI 41 PAESI MEMBRI PER SOSTEGNO, CONSIGLIO E NOTIZIE A LIVELLO LOCALE
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Notizie
Regional Managers visit BP Koirala Hospital in Dharan, Nepal
11 settembre 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 …
Over 53 paediatricians attend event hosted by IGA in Kathmandu
10 settembre 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 …
Regional Managers organise LSD patient meeting in Kathmandu
9 settembre 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 …
Regional Managers organise medical programme in Nepal
6 settembre 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 …
Orphazyme complete enrolment in Phase II clinical trial
30 agosto 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 …
August 2019 newsletter
29 agosto 2019
Read all the latest news from the IGA here
IGA expands its global reach to Central America
7 agosto 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 …Sanofi Genzyme provide ERT to three Sudanese children through their Charitable Access Programme
7 agosto 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 …
Six year old Tanzanian child gets treatment
6 agosto 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.
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New Croatian Gaucher Association joins the IGA
22 luglio 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.)
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