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February 28th: Together, Let's Give LMBRD2 a Voice
- 1 day ago
- 3 min read
February 28th is Rare Disease Day, the international day for rare diseases. For most people, it's just a date on the calendar. For our LMBRD2 community, it's THE day of the year when the world listens.
🌍 Why February 28th Changes Everything for LMBRD2
On this day, media actively seek stories about rare diseases. Social networks naturally amplify content related to #RareDiseaseDay. Genetics researchers pay attention. Donors mobilize. The world's attention turns to what it ignores the rest of the year.
For major rare diseases, it's just another day. For LMBRD2, an ultra-rare disease, it's a unique window of opportunity.
Social platform algorithms amplify what creates volume. An isolated testimony remains invisible. But when several families speak on the same day, it creates a flow. A journalist who sees three similar stories start to take interest. A researcher who discovers multiple testimonies takes note. A parent of an undiagnosed child recognizes symptoms and mentions LMBRD2 to their doctor.
The logic is simple: the fewer we are, the more we must speak together on the same day.
💪 Our Collective Strength
LMBRD2's ultra-rarity creates invisibility. Researchers don't fund what they don't know. Doctors don't diagnose what they've never heard of. Pharmaceutical companies don't develop treatments for diseases that make no noise.
It's not a question of merit. It's a question of visibility.
February 28th gives LMBRD2 leverage: when our community speaks simultaneously, even modestly, the impact is multiplied. Other ultra-rare diseases with communities of comparable size have obtained research funding and medical recognition through this annual mobilization.
Every voice counts. Not because it's a nice phrase, but because it's mathematically true: in a small community, each participation amplifies the collective effect.
📣 Let's Act Together on February 28th
First action: Join our social networks
The more of us following the association's accounts, the more our messages are amplified by algorithms. Each new follower multiplies the reach of our publications. If you haven't already, follow us on
Then invite those around you to do the same.
Second action: Share on February 28th
On that day, share the association's message or create your own. Some examples if you need inspiration:
"My child lives with LMBRD2, an ultra-rare mutation. Today, I give them a voice. #RareDiseaseDay #LMBRD2"
"Ultra-rarity means existing without being seen. But today, we are visible. #RareDiseaseDay #LMBRD2"
"LMBRD2: ultra-rare, but not invisible. lmbrd2.org #RareButStrong #RareDiseaseDay"
Under your name, your first name, or through an anonymous share of the association's post. A photo, a sentence, a simple like. Everything counts.
Third action: Mobilize your circle
Ask your family, friends, colleagues to also share on February 28th. They don't know LMBRD2, but they know YOU. Their support amplifies our collective voice.
Contact: Need help participating or testifying anonymously? The association supports you.
💙 This Day Is Ours
On February 28th, the world listens to rare diseases. If we speak together that day, we exist. If we remain scattered, LMBRD2 stays invisible.
Each voice that joins amplifies the collective impact. Yours counts.
🤝 How to support our work
Every journey like the ones shared here requires tailored support and considerable resources. Our association needs your support to continue assisting families affected by this rare mutation, funding research, and creating information and support tools. Every donation, however small, makes a difference.
Donation options
We offer several ways to support our work:
1- Global flexible donation platform
2- European online donation platform
Thanks in advance!
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