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DirectoryAssociations & Interest GroupsNGOs & NPOsGiubiascoAssociazione Malattie Genetiche Rare Svizzera Italiana
Associazione Malattie Genetiche Rare Svizzera Italiana Logo
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Associazione Malattie Genetiche Rare Svizzera Italiana

Summary

About the company

The company's core activity is to support and care for people with rare genetic diseases and their families. This includes providing information, financial support, organizing leisure activities and vacations, as well as social counseling and assistance. The company acts as an association and provides a platform for those affected to network and receive support.

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Support and counselling
Individual support and counselling for people with rare diseases and their family members, with social workers; psychological support in collaboration with psychiatrists and psychotherapists.
Financial support
Financial support for people resident in Italian-speaking Switzerland affected by a rare genetic disease, on request and subject to the association’s availability.
Inform and raise awareness
Information meetings, courses and workshops on rare diseases for patients, family members, physicians and healthcare professionals; raising awareness among authorities, the scientific community and citizens.
Discussion and exchange groups
Discussion groups and exchange meetings for patients, family members and young people, usually every 5–6 weeks via videoconference or in person.
Youth group for rare diseases
A discussion group dedicated to young people with rare diseases, led by Angelica Pennucci, with periodic online or in-person meetings.
Holiday week
Holiday week for users of the association, organised annually in various locations in Switzerland and supported by partners and donations.
Swiss Register of Rare Diseases (RSMR)
Participation in the national register for people with a diagnosis or suspicion of a rare disease, to support research, connect with others and improve care.
Press

Media

May 22, 2022Media
Malattie genetiche rare, ‘La cucina di Manu’ dona 30mila franchi
laregione.ch
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Location

Via Ada Martinoli 1a
6512 Giubiasco

At a glance

Legal form
Association
UID
CHE-488.112.634
Founded
2014 · 12 years
Last commercial register change
July 17, 2026
Employees
11 to 20

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