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Natural history study journey in europe


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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 
 
 
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QUALITY PROJECT: 200 COMPLETED QUESTIONNAIRES


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The QUALITY Project is promoted by the GFB organization to structure international patients data collected in past years, study the patients' quality of life and encourage the participation of patients in natural history studies and clinical trials.

The Quality Project runs fast: more than 200 questionnaires have been completed with 153 patients involved.

If you want to participate in the Quality Project and contribute to the quality of life study, you can find more information at the link: https://www.beta-sarcoglicanopathy.org/2-uncategorised227-the-quality-project.html

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GFB ON SPAZIO LIBERO - HOPE FOR RESEARCH


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GFB's ninth interview with Spazio Libero: THE HOPE OF RESEARCH is now available HERE with English dubbing

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GLOBAL ADVOCACY SUMMIT


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The Speak Foundation the entire patient community to the 2022 LGMD Global Advocacy Summit on the 20th of May 2022.

More information about the event at this link: https://thespeakfoundation.com/global-advocacy-summit

GFB will present its project. The same topic will be discussed at ICNMD - International Congress on Neuromuscular Diseases with an E-poster. The presentation will take place in Bruxelles on the 6th of July between 1 and 2 pm.

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GFB and the situation of patients in Ukraine


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GFB is aware of the situation of patients with Sarcoglycanopathy living in Ukraine and is in touch with some of them. If other patients in that region need help, they can get in touch with GFB by writing to This email address is being protected from spambots. You need JavaScript enabled to view it. or calling GFB's Russian interpreter at 00393483935140

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