Manus Alba — Associazione per le malattie rare pediatriche

The Association

Who we are

Manus Alba was founded on 10 February 2025, driven by the belief that to achieve meaningful results one cannot simply wait and hope — one must act. When a devastating diagnosis is received, the world collapses in an instant, strength abandons us and life seems to offer nothing but despair.

In rare diseases this is even more true, because the sense of isolation is amplified, specialists are scarce and even doctors often cannot provide answers.

Paediatric diseases carry an even heavier burden, because they strike where it hurts most. There is not a single parent who, a second after the diagnosis, has not thought: "I wish it had been me instead."

Manus Alba was created to be a point of reference for anyone facing this difficult situation. We want to be a bulwark against loneliness, a reference point for choosing the best therapy, and we want to support research so that fewer children find themselves in these conditions.

Our primary statutory commitment is to support scientific research through our partners. We do not want to leave any voice unheard: when circumstances allow, we also help individual patients. Our current main focus is adrenoleukodystrophy (ALD), for which we run several scientific and social projects.

Our long-term goal is to (re)bring the most innovative therapies — such as gene therapy, currently available only in the United States — to European soil.

Our mission is a delicate one. We feel a great responsibility for the trust our donors have placed in us. For this reason we strive to act with full transparency and to uphold a rigorous code of ethics.

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Frequently asked questions

Have questions?

Yes, fortunately there are many deserving associations doing invaluable work. However, not all rare childhood diseases have an active community supporting research and serving as a reference for families. Manus Alba exists to give a voice to these situations.

We are always open to collaboration. We are a small community without a large budget, but that is also our strength. With a lean structure and no employees, the vast majority of donations goes directly to supporting research and restoring hope to those who have lost it.

We are aware that photos of sick children might generate more emotional reactions. We chose not to do so to protect the privacy of children who are already going through a very difficult time, and because we are not comfortable commodifying suffering. We prefer to talk about the causes we support and our projects.

We are a small community and we try to keep our activities at zero cost, investing all available funds in research and support projects. The website was not built by a professional — we built it ourselves using only a text editor. If you can and want to help, any contribution is welcome.

No. Adrenoleukodystrophy is our primary focus because the founders and most of our members have been personally touched by this terrible disease. However, we have also helped other children by making our network available for conditions such as MLD, leukaemia and even neuroblastoma.

The easiest way is through a donation. You can also offer your professional skills on a voluntary basis: we need healthcare professionals, engineers, lawyers, social media experts, graphic designers and many other profiles. Finally, you can help simply by following us on social media and sharing our content.

Research in our hands

Who we are

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