GFB SCIENTIFIC WEBINAR RECORDING | 15TH NOVEMBER 2022

On Youtube, you can watch the GFB scientific webinar organized on 15 November 2022.

During this GFB science webinar, Prof. Volker Straub (University of Newcastle, UK) provides an overview of LGMD patient registries and updates on ongoing gene therapy projects for LGMD.
The webinar was held in English only but subtitles are available.

CLICK HERE TO WATCH THE WEBINAR

  • Hits: 264

GFB UPCOMING EVENTS

28th February 2023  |  GFB participation in Rare Disease Day 2023

28th February 2023  |   GFB 10th Anniversary

10th April 2023  |   GFB's 10-year anniversary lunch

8-10th June 2023 |  GFB participation in the AIM Congress in Padova, Italy

 

 

  • Hits: 1246

GFB AT THE AIM CONGRESS IN MATERA, ITALY

GFB will participate in the AIM 2022 congress organized by the Italian Association of Myology. The congress will be held in Matera, Italy from the 19th to the 22nd October.

Lucica Bianchi (GFB Head of the communication office and social media manager) will present the poster "Observational study: the quality of life of patients with alpha-sarcoglycan, beta-sarcoglycan and gamma-sarcoglycan gene mutation" and will participate in the Round Table session: Meeting With Patients Associations scheduled for Saturday 22 October.

CONGRESS PHOTOS

GFB_presentation.jpg

  • Hits: 489

Natural history study journey in europe

Journey is a clinical outcomes assessment study, also referred to as a natural history study. The study does not involve the use of an investigational study drug but rather studies the natural progression of the disease and how it affects the muscles, lungs, and heart in individuals receiving the current standard of care with their doctor/care team. The study is designed to collect medical history, clinical tests, quality of life questionnaires, and functional assessments on individuals affected with Sarcoglycan Limb-girdle muscular dystrophy.
 
Four centres are now open in Europe for the Natural history study  JOURNEY:
 
GERMANY
Zentrum für Kinderheilkunde und Jugendmedizin Uniklinikum Giessen Marburg (UKGM), Standort Giessen
Giessen, Hessen, Germany, 35392
Contact +49 (0)641-985-56843 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Andreas Hahn, MD       
 
ITALY
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan, Italy, 20122
Contact 39-02-55033802 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Giacomo Comi, MD
 
 
TURKEY
 
Lokman Hekim Etlik Hastanesi
Ankara, Turkey, 06100
Contact 90 532 234 12 26 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Haluk Topaloglu, Prof         
 
 
UNITED KINGDOM
 
Institute of Genetic Medicine, International Centre for Life
Newcastle Upon Tyne, United Kingdom, NE1 3BZ
Contact 0191 241 8652 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Jordi Diaz-Manera, MD, PhD 
 
 
  • Hits: 1071

©2020 GFBONLUS.IT - GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE
+39 328 0075986 This email address is being protected from spambots. You need JavaScript enabled to view it.

Via Civasca 112 23018 Talamona - SO  Italia

Made by Betsoft