Associazione Famiglie COL4A1-A2 APS is a non-profit organization that supports families with children and / or relatives affected by COL4A1 / COL4A2 gene mutation.

The Organization was born on 19 December 2021 from the meeting of family members of patients affected by this mutation with the aim of supporting families in a spirit of mutual help, facilitating sharing and aiming to guarantee the best quality of life for children and adult patients.

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THE STATUTE
BECOMING MEMBER

Mission

We support children and adult patients affected by COL4A1 / COL4A2 gene mutation and their families, and our efforts are focused to allow an easy access to multidisciplinary management for disease monitoring and to spread more and more knowledge of this syndrome. In this direction, we work with clinicians and rare disease coordination centers, so as to promptly reach those who receive a diagnosis of COL4A1 mutation and provide our support.

Vision

The patient is central to us and we work to let him/her have access to the best quality of life. We are spokespersons for his/her needs and rights, primarily the right to treatment. We are therefore committed to ensuring that everyone receives the best assistance and the best support. In this direction we cooperate with clinicians and promote scientific research to understand the basic mechanisms and hopefully one day identify a possible cure.

Board of directors

Simona Manodoro
President
Francesca Manodoro
Vice-President and Treasurer
Antonietta Borgo
Secretary

Founding members

Jenny Bizzotto
Antonietta Borgo
Francesca Manodoro
Simona Manodoro
Vittorio Manodoro
Luca Potestà
Angela Sergio

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