Notizie

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.)

read more »

IGD Press Release

17 luglio 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 luglio 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 »

Jeremy Manuel is the IGA's rare star for IGD2019

5 luglio 2019

During the EWGGD meeting in Clermont-Ferrand, we unveiled our own Rare Star:Jeremy Manuel OBE in recognition of his 25 years' dedication to the global Gaucher community.

Jeremy is featured on the 2019 poster which is now available to …

read more »

Brazil to join the IGA

26 giugno 2019

We are pleased to announce that the Catarinense Association of Patients, Friends of Gaucher and Other Rare Diseases (Brazil) have now joined the IGA, taking our membership up to 51 member associations from 52 countries …

read more »

ORDER YOUR #IGD2019 TATTOOS - MEMBERS ONLY

5 giugno 2019

As part of IGD2019 "Rare Stars: Bringing hope, improving lives" we are looking into the possibility of producing the IGD2019 logo as temporary tattoos* which we will send to each of our member patient groups to share with …

read more »

NOMINATE YOUR RARE STAR FOR #IGD2019

4 giugno 2019

Following the announcement of our 2019 campaign for IGD "Rare Stars: Bringing hope, improving lives" we would like to ask you to nominate your own Rare Star - this should be someone who has made a difference in your life as a …

read more »

International Gaucher Day 2019 #IGD2019

31 maggio 2019

Following the success of the 2018 'Rare Stars: Giving hope, improving lives' campaign, we are continuing the theme but with a more personal focus in those unseen rare stars who have shown support to Gaucher patients during their …

read more »

May newsletter

28 maggio 2019

Our May newsletter is available to download here

April newsletter

25 aprile 2019

Our latest newsletter is now available - read about the IGA's plans to expand its global reach and its partnership with AVROBIO to explore gene therapy as a potential treatment for Gaucher patients here