Campaign to raise awareness for rare, invisible diseases

“A true superhero’s power is invisible. Just like many rare diseases.” with this tagline, the non-profit organisations ALAN Maladies Rares Luxembourg and EDS Lëtzebuerg are launching their online awareness campaign “Invisible Heroes” in September 2021. The goal of the campaign is to fight prejudices and increase the public’s understanding of rare and invisible diseases.

“You don’t look sick. “

“You’re always tired. “

“Don’t exaggerate. I also get pain, but I don’t make such a fuss. “

“How dare you park in a parking space for people with disabilities? “

Unfortunately, people with a rare and invisible disease hear sentences like these far too often, because you can’t see their disease and symptoms from the outside. To help fight these misconceptions and prejudices, ALAN and their partner EDS Lëtzebuerg are launching a campaign to raise awareness for rare and invisible diseases.

The campaign was launched on 1 September 2021 on the social media platforms Facebook and Instagram. Throughout the month of September, the campaign will introduce 10 adults and children who are “invisible heroes” in their daily lives, because they fight against a rare, invisible disease and against prejudices.

Together they want to show that:

  • are diseases are not always visible
  • even if someone looks “fine”, they may be struggling with a chronic disease, that causes constant pain, fatigue, nausea, etc.
  • it takes strength and courage every day to face the challenges of life with a rare disease, but even more so to face people’s prejudices
  • a rare disease changes your life, but it does not define who you are
  • people with a rare, invisible disease are not looking for pity, but understanding.

You can help the campaign heroes and other people living with a rare, invisible disease by believing them, listening, not comparing your situation to theirs, being open and non-judgemental and by sharing this campaign and joining the discussion on Facebook & Instagram !

You can find the whole campaign, including the profiles of the heroes on the campaign website.