Rare Disease Day 2025: Shining a Light on the Unseen Battles

 

Welcome to February, the rarest month of the year! As we gear up for Rare Disease Day 2025, we’re reflecting on its impact, history, and how RARE. has built its traditions through our Grow Awareness Campaign—because awareness isn’t just one day, it’s every day.

 

What is Rare Disease Day?

Every year, on the last day of February, the global rare disease community unites to make the invisible- visible. Rare Disease Day is a movement dedicated to raising awareness for over 300 million people living with rare diseases worldwide. It’s a day for advocacy, action, and amplifying the voices of those too often unheard.

 

The Origin of Rare Disease Day

The inaugural Rare Disease Day is February 29, 2008—a rare date fitting for a rare cause. Spearheaded by EURORDIS (The European Organisation for Rare Diseases), the day was designed to spotlight the challenges faced by those living with over 7,000 rare diseases.

📍 Fast-forward to today: Over 100 countries participate in Rare Disease Day, making it a global movement for change.

 

Why Rare Disease Day Matters

While a rare disease affects fewer than 1 in 2,000 people, the collective impact is massive:

💙 300 million+ people worldwide are living with a rare disease (RareDiseases.org)

💙 75% of rare diseases affect children, and sadly, 30% of these children won’t live to see their 5th birthday (AccellaCare)

💙 95% of rare diseases have no approved treatments, highlighting the urgent need for research, funding, and policy change (NORD)

 

Rare Disease Day is a call to action:

✔️ Raise Awareness – Shine a light on the challenges of rare disease warriors.

✔️ Advocate for Research – Push for treatments and better healthcare policies.

✔️ Improve Access to Care – Fight for equitable healthcare solutions.

✔️ Build Community – Connect, support, and amplify voices.

 

RARE. & The Grow Awareness Campaign

At RARE., we believe in 365 days of awareness, not just one. That’s why we created Grow Awareness—a campaign that started in 2019 and has since evolved into a community-driven movement celebrating connection, creativity, and advocacy.

 

How It Started vs. How It’s Going:

🌱 2019: The First ‘Plant & Sip’ Event – Our first event symbolized resilience and growth.

🎥 2020: MTV Joins the Movement – A powerful collaboration with MTV to raise awareness.

🗣️ 2021: 24-Hour Clubhouse Marathon – Virtual storytelling and advocacy sessions.

💌 2022: Virtual Card-Making Event – Spreading love and encouragement to our Herd.

🧩 2023: The ‘Pieces of Rare’ Puzzle – A tribute to individuality & unity.

🤝 2024: Friendship Bracelet Swap – Empowering and sharing stories through creativity.

What’s Next? The 7th Annual Grow Awareness

2025: Sip, Thrift, and Shout for a Cause! This year’s Grow Awareness 2025 event is all about Connection and discovery. Whether you join us in person (Sodus Point, NY, on February 22) or virtually (February 28), get ready to discover RARE finds and connect with the community around you.

 

How to Get Involved This Rare Disease Day Season

🌍 Support the Global Movement

Share Your Colors – Paint your hands, take a photo, and post it with #RareDiseaseDay tagging @rarediseaseday.

Attend or Organize an Event – Find local or virtual events on RareDiseaseDay.org.

Illuminate Landmarks – Help get buildings and monuments lit up in Rare Disease Day colors.

Raise Awareness Online – Share facts, stories, and resources about rare diseases on social media.

💙 Make an Impact

Fundraise for Rare Disease Causes – Host a bake sale, run a charity stream, or set up a donation drive.

Advocate for Policy Change – Contact legislators to push for better healthcare and research funding.

Support Rare Disease Organizations – Donate or volunteer for groups working in rare disease research and patient support.

🤝 Get Involved with RARE. for Rare Disease Day 2025

Attend Our ‘Grow Awareness’ Event – Participate in-person in Sodus Point, NY (February 22) or virtually on February 28. Register here.

Join the ‘RARE. IS’ Campaign – Download the RARE. IS template, customize it with your story, and share it using #RareIs, #FindYourRARE, and #RareDiseaseDay. Tag @FindYourRARE to be featured!

Create a Social Profile Frame – Show your support by adding a Rare Disease Day 2025 frame to your social media profiles. Instructions are available on our Rare Disease Day page.

Add Your Cause to the ‘Awareness is 365’ Calendar – Ensure your cause gets year-round visibility by submitting it to our Awareness is 365 Calendar.

 

Get all the details & sign up here: info.findyourrare.com/rdd2025

 

Together, We Make the Invisible Impossible to Ignore.

Rare Disease Day is more than a single day on the calendar; it’s a heartfelt global movement dedicated to making sure that every individual affected by a rare disease feels recognized, cared for, and empowered. By coming together to show our support, raise our voices, and stand alongside one another, we show every zebra that their story is important, I know im not alone when I say showing up makes all the difference. So all February long join us as we grow awareness and share our RARE. 🦓


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