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ORGANIZATION: Conquistando Escalones

January 27, 2019|LGMD Organization - Interviews, LGMD1F, ORGANIZATION|

NAME OF ORGANIZATION:          CONQUISTANDO ESCALONES WEBSITE:              www.conquistandoescalones.org FACEBOOK:        www.facebook.com/conquistandoescalones TWITTER:             @AceDistrofia WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:    We focus on Limb Girdle Muscular Dystrophy type 1F (LGMD1F)  IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? Yes, we have created a patient registry and patients can contact us by sending an email to [email protected] IS YOUR ORGANIZATION A NON-PROFIT? IF SO, WHAT TYPE:         Yes, we are registered in Span and in Italy. WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: The Association was created because of the necessity to spread [...]

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