ALAN Launches Advice Campaign in Support of Rare Disease Community

On Wednesday 30 September 2026, Luxembourg non-profit organisation ALAN – Maladies Rares Luxembourg announced the launch of a new campaign, “Gutt gemengt” (“Well-intentioned”), which aims to strengthen understanding and empathy towards visible and invisible disabilities through a series of nine short videos and an approach that encourages reflection.

ALAN, whose mission is to improve the quality of life of people affected by a rare disease, said that people living with a rare disease sometimes receive well-intentioned but often inappropriate advice from those around them, and its new online awareness campaign intends to highlight the gap that can sometimes exist between this benevolent intention, the wording used and what constitutes genuine help for the person concerned.

ALAN said: “Some of the statements illustrated in the campaign are sincere and well-intentioned, but simply clumsy due to the lack of knowledge or understanding of the people making them. Others contain a subtle form of judgement, which is more likely to point the finger than to support the person.”

The non-profit organisation noted that general advice such as “stay positive” and “reduce your stress”, or judgemental comments such as “perhaps you should see a psychologist” and “you need to toughen up a little”, wrongly suggest that a simple change in attitude or lifestyle can influence the course of a rare and chronic disease.

ALAN emphasised: “What these ‘good pieces of advice’ have in common is that they illustrate a lack of understanding of what living with a rare disease really means. Yet very little is needed to offer genuine support to those concerned: a sincere interest, active listening and recognition of their lived experience without comparison, minimisation or judgement.”

Through a series of nine short videos, ALAN’s campaign draws on real-life accounts collected from the community of people living with a rare disease, illustrating both the comments addressed to them and easy, compassionate solutions that promote the desired positive effect. No video tells the story of a single person. Together, they represent a shared experience, conveyed through many different voices.

Further information about the “Gutt gemengt” campaign can be found at https://alan.lu/wellmeant/.