February 28th: Together, Let's Give LMBRD2 a Voice

February 28th is Rare Disease Day, the international day dedicated to 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, the media actively seeks stories about rare diseases. Social networks naturally amplify content related to #RareDiseaseDay. Genetic researchers are listening. Donors mobilize. The world's attention turns toward what it ignores the rest of the year.

For well-known 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 testimonial remains invisible. But when multiple families speak on the same day, it creates a wave. A journalist who sees three similar stories starts to investigate. A researcher who discovers multiple testimonials takes note. A parent whose child is not yet diagnosed recognizes symptoms and mentions LMBRD2 to their doctor.

The logic is simple: the fewer we are, the more we need to speak together on the same day.

💪 Our Collective Strength

The ultra-rarity of LMBRD2 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 a leverage effect: when our community speaks simultaneously, even modestly, the impact multiplies. 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, every participation amplifies the collective effect.

📣 Let's Act Together on February 28th

First action: Follow us on social media

The more of us follow the association's accounts, the more our messages are amplified by the algorithms. Each new follower multiplies the reach of our publications. If you haven't already, follow us on

• Facebook : https://www.facebook.com/Lmbrd2.Association/

• Instagram : https://www.instagram.com/lmbrd2_association/

• LinkedIn : https://www.linkedin.com/company/107540498/

Then invite your friends and family 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, mais pas invisible. lmbrd2.org #RareButStrong #RareDiseaseDay »

Under your name, your first name, or via an anonymous share of the association's publication. A photo, a sentence, a simple like. Everything counts.

Third action: Mobilize your network

Demandez à votre famille, vos amis, vos collègues de partager également le 28 février. Ils ne connaissent pas LMBRD2, mais ils vous connaissent, VOUS. Leur soutien amplifie notre voix collective.

Contact: Need help participating or sharing anonymously? The association is here to support you.

💙 This Day Belongs to Us

On February 28th, the world listens to rare diseases. If we speak together on that day, we exist. If we remain scattered, LMBRD2 stays invisible.

Every voice that joins amplifies the collective impact. Yours counts.

🤝 Comment soutenir notre travail

Every journey like those shared here requires personalized support and considerable resources. Our association needs your support to continue helping families affected by this rare mutation, fund research, and create information and support tools. Every donation, however small, makes a difference.

Donation Options

Nous proposons plusieurs façons de soutenir notre travail :

1- International Flexible Donation Platform

2- European Online Donation Platform

Merci d'avance !