LET'S PARTICIPATE WITH GFB AT THE RARE DISEASE DAY - FEBRUARY 28th 2021

World Rare Disease Day will reach its fourteenth edition on February 28, 2021 and promotes equity worldwide as access to equal opportunities that can enhance the potential of people with rare diseases.

 

PARTICIPATE IN THE PROJECT LET'S TURN THE LIGHTS ON RARE DISEASES

We ask you to join the awareness campaign "Let's turn the lights on rare diseases", promoted by Uniamo Italian Federation of Rare Diseases,  italian national coordinator of the Day. The initiative will take place on  February 28th  and will be picked up by the local and national press as well as on the Federation’s official social networks.
In particular, we ask you to illuminate a monument in your city, in the colors of the day (blue, pink, purple, green or one of your choice). GFB is organizing the event in some Italian cities, participating is simple, we give you a form to fill out and you have to deliver it to your municipality.
To participate: This email address is being protected from spambots. You need JavaScript enabled to view it. or 3493374060.
 
GFB MEMBERSHIP:
TALAMONA, city hall
SCHIO, statue of the weaver in Piazza Rossi
CANAZEI, city hall
SONDRIO, bell tower of the collegiate church
MORBEGNO, small temple of the Alpine troops
VALDISOTTO AND BORMIO, Sanctuary of Oga - Beata Vergine di Caravaggio
 

TAKE PART IN THE TULIPS PROJECT

Do you want to receive a tulip bulb for rare disease day? Some European associations, including GFB, are sending them to their patients / supporters. Participation is free for everyone. Then you will have to undertake to take care of it and when it is in bloom you will send us your photograph with the tulip.
Send your request to: This email address is being protected from spambots. You need JavaScript enabled to view it. or 3493374060.
bouquet 20 tulipani
 

PARTICIPATE IN OTHER NATIONAL AND EUROPEAN INITIATIVES

 
 
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sarepta community bulletin: covid-19 vaccination and gene therapy

sarepta community bulletin

SAREPTA COMMUNITY BULLETIN: COVID-19 VACCINATION AND GENE THERAPY

Sarepta has received many questions related to COVID-19 vaccines and gene therapy. Here, we provide current answers to some of these frequently asked community questions. Answers are based on the information available as of December 18, 2020, and are subject to change based on new information. For more on COVID-19 vaccines, please view the CDC’s COVID-19 website.

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parent project usa: watch covid-19 vaccination & duchenne what you need to know

PARENT PROJECT USA: WATCH COVID-19 VACCINATION & DUCHENNE WHAT YOU NEED TO KNOW

We all have spent the last several months doing our best to keep ourselves and our families safe, while adjusting to this new virtual world. PPMD recognizes this has been nothing short of challenging, and we remain committed to providing support, community engagement, and the most accurate and up-to-date information possible during a time of unknowns. This extends to new learnings of COVID-19 vaccines, which PPMD believes to be the best form of protection against the virus, and we hope is a potential solution to alleviate this pandemic.

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international webinar about LGMD and gene therapy

 

 Watch: Covid-19 vaccination and Duchenne, what you need to know - Parent Project - December  12th  2020

SRP-9001 Gene Therapy Path Forward - Parent Project - November 24th 2020 

LGMD aktueller Stand der Forschung - DGM - October 24th 2020

A Promising New Oral Treatment for LGMD2I: An Update on the Development of BBP-418 - The Speak Foundation - October 23th 2020

Gene Repair Approaches for LGMD 2i and 2g: Understanding CRISPR - The Speak Foundation - October 10th 2020

Sarepta Simulcast for a New Natural History Study - The Speak Foundation - September 11th 2020

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