A spark lit when we met them: they are the families touched by rare diseases, affected by a pain that makes the word disease something ordinary when confronted with the unique and exceptional situation they have to face.

Each case, even the last family, enriches the others in a DNA-like entanglement. Rare genetic diseases and their diagnoses: a world of their own, difficult to read and understand if you haven’t got the human background these rare parents are able to pass on.

Each family is a tail of that comet that marks the path for the others: a journey made of new beginnings where no one reaches the end.

And this is the awareness of Fondazione Efesto, which creates a supportive link between rare families and exceptional realities such as Fondazione Telethon, capable to lift the family dynamics of all those people who would risk losing themselves in the darkness of a rare disease. Welcome and assistance are the priorities in this journey where direction is offered by competent families now capable of sharing.

The Efesto Foundation offers psychological support and the chance to structure help and links, trying to respect on a hand the uniqueness of the people who are an integral part of the family, and on the other by recognising rare families as micro-cells of a new society where the disease becomes the reason for connecting and sharing outside hospital corridors. These families that have within them, alongside the person suffering from a genetically rare disease, at least one of the parents who has become an expert, a scientist and a doctor out of love, patient and competent enough to deal with the everyday difficulties; they are incredibly able to drag the other families towards solutions of well-being, chasing away loneliness. Everyday life and the practice of sharing a true good example offered by families in the same situations, it provides a bridge to these small isolated realities to remain in the social world.

We really hope to ease the darkness of loneliness, the silence of those who dare not speak and the fear of the distracted and turbulent world around us. A peaceful and serene place of deep sharing.

Families involved face extraordinary situations, transforming their experience into a resource for other families, by creating a path of sharing and mutual support. The Foundation recognises and promotes the uniqueness of each person and each family, considering them part of a new society in which illness becomes a reason for connection. Families, thanks to their expertise, become a point of reference for others, helping them to reduce loneliness and the fear of feeling abandoned. The Foundation aims to create a space of peace, serenity and new humanity, where the uniqueness of each individual is respected and valued.

For us families, only through sharing rare diseases we find hope in the future lives of our children. For them and for us as parents, it is crucial to collaborate with institutions and associations: patients and families together to create a bridge between scientific research and clinical practice. People with rare diseases face chronic and disabling conditions, and being a small percentage of the population we often feel isolated and abandoned. This rarity brings with it high risks, late diagnoses, insufficient or non-existent and costly therapies, long hospital stays and real difficulties in social, school and work management. These are the challenges we face, hoping to overcome them as best we can…in sharing.