beta-sarcoglicanopathy.org

THE GENE THERAPY PROJECT FUNDED BY  GFB ONLUS

"MUSCLE DIVERSITY": THE CARLES SANCHEZ RIERA PROJECT

Carles Sanchez Riera is starting an interesting project on LGMD Limb Girdle Muscular Dystrophies, entitled "Muscular Diversity",  at the "La Sapienza University" of Rome, in Italy.

Carles has a limb girdle muscular dystrophy and his aim is to understand the differences among muscles of the same patient: "Nothing is black or white, there are many muscles of our body that work appropriately, they could have the key cues to find a treatment."

https://sites.google.com/view/muscle-diversity-project/

The GFB on National Television for the seventh time

On July 24, Rai Parlamento broadcast the seventh interview of the GFB on the Italian national television, entitled "Beta-sarcoglicanopatie: research and telemedicine".

watch the video

POSITIVE DATA FOR SRP-9003

June 8th  2020: Sarepta Therapeutics Announces Positive Expression and Functional Data From the SRP-9003 Gene Therapy Trial to Treat Limb-Girdle Muscular Dystrophy Type 2E.

Read more

Other press releases:

New data gives hope for Limb Girdle Muscular Dystrophy gene therapy - Patient Worthy

SRP-9003 gene therapy for LGMD2E shows benefits after 1 year - Muscular  dystrophy news today

COVID-19 RESOURCES FOR MUSCULAR DYSTROPHY COMMUNITY

FROM THE SPEAK FOUNDATION:

In the website of the Speak Foundation www.thespeakfoundation.com you can find:

- COVID-19 Advocacy Letter for Individuals with MD

- Advocacy Letter to Healthcare Providers

- COVID-19 Preparedness Checklist       It is extremely important that you gather the following information and have it readily available if you should become ill from COVID-19. You should also make sure your family members and all caregivers know where this information is kept in the event you require going to the hospital for health issues related to COVID-19. Keep it in a safe and easily accessible location.

FROM EURORDIS

In the website of Eurordis  https://www.eurordis.org/content/eurordis-press-releases you can find:

- EURORDISstatement_COVID19Triage

EURORDIS-Rare Diseases Europe would like to bring to their urgent attention the concerns and needs of people living with a rare disease, their families and carers during the COVID-19 crisis. Through this open letter, we implore policy makers and authorities in Europe and around the world to take action to protect people living with a rare disease from becoming even more vulnerable during this crisis in line with the recommendations set out.

CORONAVIRUS: informations for MD patients

Here you can find PPMD COVID-19 (CORONAVIRUS) INFORMATION CENTER

OTHER PATIENTS AFFECTED FROM LGMD2C-2D-2E  IN GFB ONLUS

In the last months GFB ONLUS has found other patients affected from Lgmd2c-2d-2e. GFB counts now a total of 403 patients affected from Sarcoglycanopathy, so divided:

On the website of the association you can find the list of the patients sorted by geographical provenance to the link :

http://www.beta-sarcoglicanopatie.it/index.php?option=com_content&view=article&id=46&Itemid=54