Associations
Create connections, share passions, and build together: a space designed to promote meeting and collaboration with associations.
A.Fa.D.O.C. (Associazione Famiglie Deficit Ormone della Crescita ed altre patologie rare) was established on October 26, 1993 and is the only Italian nonprofit association dealing with pathologies whose common denominator, in pediatric age, is growth hormone therapy.
It morally and psychologically supports families and patients, helping them overcome the impact of the diagnosis and accompanying them throughout the course of therapy, which, in some cases, can last a lifetime.
The association deals with GH deficiency, Turner syndrome, Panhypopituitarism, SHOX gene abnormalities, SGA/ IUGR.
Institutional site: click here.
The Jacobs Syndrome XYY Association is an organization established for the purpose of offering support and assistance to people with Jacobs Syndrome (or 47,XYY Syndrome), people with 48,XYYY Syndrome and peolple with 49,XYYYY Syndrome, as well as their families.
The Association is active on several fronts to improve the quality of life of these people through integrated action involving medical, psychological and social aspects.
The association’s main activities include:
- Hospitality and information: provides guidance on diagnostic and post-diagnostic routes by directing families to the most appropriate specialized centers.
- Psychological and social support: offers individual and group counseling for people with the syndrome and their families, with the aim of promoting social inclusion and greater autonomy.
- Orientation on rights and services: assists families in the recognition of legal protections and in the educational and employment process, with a focus on independent living support services.
- Support for expectant families: supports parents receiving prenatal diagnoses, providing information and counseling to meet future challenges.
The goals of the association are:
- Create a support network: a key aspect of their work is to build a support network for families and patients, facilitating the exchange of experience and knowledge between parents, patients and health professionals.
- Collaborate with specialist centers: it is considered essential to establish direct contacts with major centers, particularly those dealing with chromosomal aneuploidies and their variants. The Association aims to be a point of reference for families and to collaborate with genetic physicians in case management by exchanging information and offering direct support.
- Improving the quality of life for people with Jacobs Syndrome: through a combination of emotional, informational and practical support, it aims to ensure that every person with this condition has access to high-quality therapies, appropriate support services and opportunities to live a full and fulfilling life.
Institutional site: click here.
L’ASD The Sunflowers of Locride (I Girasoli della Locride) – Team Calabria Special Olympics – was founded in 2019 on the initiative of 19 families and input from President Irma Circosta. It is a polysport amateur association that operates in the Locride area and organizes sports courses in different disciplines.
The association mainly involves people with disabilities and through sports promotes the inclusion in the social tissue of these people, particularly by carrying out sports activities that involve them in disciplines such as swimming, basketball, volleyball, bowling, soccer and karate.
The Association’s goal is to find the abilities of each person involved by directing the person into the activity for which he or she may be suited.
BE BORN KLINEFELTER – ODV (NASCERE KLINEFELTER – ODV), founded in 2015 and registered with RUNTS (Single National Register of the Third Sector), is the reference association in Italy for Klinefelter syndrome, a poorly known but surprisingly frequent genetic condition. Our mission is to provide clear and accurate information about Klinefelter syndrome (47,XXY) and also about other rare syndromes such as syndrome 48,XXXY, syndrome 48,XXYY, and syndrome 49,XXXXY.
We are committed to offering practical help, listening and support from prenatal diagnosis to adulthood, supporting families along all stages of growth. In addition, we are dedicated to protecting the rights of those living with Klinefelter syndrome, ensuring that each individual receives the attention and respect they deserve. With passion and devotion, we stand by children, adults, and families so that no one has to deal with this genetic condition alone, and, also through a network of experts and advanced medical centers, we ensure that each person has a peaceful and conscious journey through life.
Experiential site: click here.
Institutional site: click here.
