Un saluto al Prof. Nereo Bresolin
Italian Register for muscle dystrophies and myopathies
IF YOU HAVE THIS DISEASE, DON'T WAIT TO SIGN UP.
With your Donation we seek a cure by taking care of people
FROM TAKING CHARGE TO DIAGNOSIS, SUPPORT AND TREATMENT
With your 5 × 1000 to AICa3 Onlus we could also do the impossible
FOR THE FIGHT AGAINST MUSCULAR DYSTROPHY OF THE CATERPILLARS
DECENNIAL AICa3 2012-2022
Celebrating achievements in the fight against cingulate muscular dystrophy
WEBINAR “I PROGETTI DI TERAPIA GENICA” 25.11.2022
GFB vi invita al terzo Webinar scientifico dedicato ai pazienti affetti da LGMD che si terrà venerdì 25 novembre 2022 alle ore 15 CET (Italia).
AICa3 is the Italian Calpaine 3 Association, for the fight against Calpain 3 Deficiency Muscular Dystrophy.
Since this is a very rare disease (1 case every 200,000) and therefore almost unknown, we want to arouse and maintain public interest in the problems of people affected by this disease by promoting and supporting scientific research, through the collection of funds to be allocated to the same, and give a helping hand to all those people who are facing this problem through the exchange of information and experiences.
We also want to contribute to the improvement of the wealth of information that exists in Italy about the needs and supports that are indispensable for patients with cingulate dystrophy and their families, in particular by informing them about the possibilities of care, therapies and places of assistance.
La nostra missione è sostenere la ricerca con l’obiettivo di trovare il trattamento terapeutico che ponga definitivamente fine alla Distrofia Muscolare dei cingoli da deficit di Calpaina3 e le altre calpainopatie.
- Identify and support the most promising short- and long-term research projects and possible therapeutic trials.
- Encourage investment in research projects specific to Calpain 3 deficiency cingulate dystrophy.
- To be a spokesperson for patients to the institutions in order to obtain policies to improve the lives of patients and their families.
- Collaborate with physicians and other healthcare providers, not just from Italy, to ensure all patients have access to optimal care.
- Provide a supportive environment in which patients, families, and friends can share needs, concerns, and experiences.
- Increase knowledge of Cingulate Muscular Dystrophy among health care providers and promote early detection.
- Share information about treatments and care options with all patients.
- Increase awareness toward Calpain 3 Deficiency Muscular Dystrophy of the Belts and provide specific informational materials.
Our work and relationships are guided by some fundamental principles that stand on positions of responsibility, universalism and activity:
- Patients and their families are at the heart of everything we do.
We believe that the struggle to find a cure in the field of cingular dystrophy (LGMD 2A) requires a wide-ranging approach that combines the demands and urgencies of patients and family members with the possibilities in the field of medical and scientific research.
- We see many reasons for hope supported by the awareness, interest, and community of those who have decided to be part of our journey.
- We believe that knowledge is essential, whether for parents who want the best for their children or for patients who just want to understand what is happening to them, or for researchers engaged in studying the disease and the therapies aimed at slowing it down or, in an optimistic hypothesis, curing it, or for healthcare professionals trying to provide the best possible care.
- A community that is united, working together, is stronger and more capable of being heard.
- Our fight will not end until every person with calpainopathy can consider themselves cured.