L´EGA est une association européenne qui représente les intérêts des patients de Gaucher ainsi que ceux des associations de patients de Gaucher sans but lucratif en Europe et dans le monde entier.
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LIEN VERS UN DE NOS 41 PAYS MEMBRES POUR RECEVOIR DES CONSEILS LOCAUX ET DES NOUVELLES
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fermer- Finland
- Norway
- Sweden
- Estonia
- Russian Federation
- Latvia
- Denmark
- Lithuania
- United Kingdom
- Netherlands
- Ireland
- Poland
- Germany
- Belgium
- Czech Republic
- Ukraine
- Slovakia
- Luxembourg
- Moldova, Republic of
- Austria
- France
- Switzerland
- Romania
- Slovenia
- Croatia
- Serbia
- Bosnia & Herzegovina
- Bulgaria
- Italy
- Macedonia, the Former Yugoslav Republic of
- Spain
- Greece
- Israel
Nouvelles & Événements
IGA's Membership Grows to 56 Member Associations From 54 Countries
23 janvier 2020
We’re delighted to announce that Humanitarna organizacija “Nada u bolji život”/Charity organisation “Hope for a Better Life has joined the IGA, bringing our membership up to 56 member associations from 54 countries:
…
AVROBIO Announces Clinical and Regulatory Progress for Gaucher Disease Program
15 janvier 2020
AVROBIO has announced that it has received notice of clearance from the FDA regarding an Investigational New Drug (IND) application for AVR-RD-02, its investigational gene therapy for the treatment of Gaucher disease and has received consent from …
PR001 Administered to International Type 2 Gaucher Disease Patient Via Compassionate Use Pathway
10 janvier 2020
Prevail Therapeutics has granted a compassionate use request for the administration of PR001 to a single patient with Type 2 Gaucher disease via a compassionate use pathway, following approval by an international regulatory authority, and the …
Prevail Therapeutics is recruiting patients for PROPEL, a clinical trial testing an investigational gene therapy called PR001 to treat Parkinson’s disease in people with GBA mutations
8 janvier 2020
Prevail Therapeutics is recruiting patients for PROPEL, a clinical trial testing an investigational gene therapy called PR001 to treat Parkinson’s disease in people with GBA mutations. About 7 to 10 percent of people with Parkinson’s …
December 2019 newsletter
17 décembre 2019
Our latest newsletter includes a report from the 5th International Gaucher conference on bone disease, the executive summary from the African Taskforce and a good news story from Sudan where the IGA was able to get treatment to a young girl. …
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 …
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 …
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 …
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 …