Nouvelles & Événements

IGA's membership grows to 55 member associations from 54 countries

12 décembre 2019

We’re delighted to announce three new patient groups have joined the IGA, bringing our membership up to 55 member associations from 54 countries:

• Colombian Association of Patients with Lysosomal Storage Diseases
• Tunisian Association …

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November 2019 newsletter

28 novembre 2019

Meet our new team members and read all the latest news from the IGA including an update from the taskforce to improve the lives of Gaucher patients in Pakistan and reports from recent patient meetings in Albania (pictured below) and Belgium - click …

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IGA appoints a new co-opted board member

30 octobre 2019

Vesna Aleksovska writes:

"As chair of the IGA, I am delighted to announce that Aviva Rosenberg the IGA representative for the National Gaucher Foundation has agreed to join the IGA Board as our new co-opted member. Aviva is a health care …

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October 2019 newsletter

24 octobre 2019

We have published our latest newsletter, you can read it here

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 …

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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 …

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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 …

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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 …

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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 …

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