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Rare Disease Day

Rare Disease Day 2025 – Friday, February 28

Rare Disease Day is a global movement to raise awareness and advocate for the more than 300 million people worldwide living with a rare disease. Held annually on the last day of February, this day unites individuals, families, organizations, and communities to shine a light on the challenges of rare diseases and the urgent need for research, support, and policy change.

Why Rare Disease Day Matters to the PWS Community

Prader-Willi syndrome (PWS) is a rare and complex genetic disorder that affects approximately 1 in 12,000-20,000 people. For those living with PWS and their families, Rare Disease Day is an opportunity to amplify our voices, share our stories, and advocate for the support, treatments, and resources that can change lives. By raising awareness, we foster understanding, strengthen our community, and drive progress in research and care. Together, we stand with the rare disease community to ensure that no one faces PWS alone.

Show Your Support – Share & Raise Awareness

Join us in raising awareness for Prader-Willi syndrome this Rare Disease Day! We’ve created three PWS-specific Rare Disease Day graphics for you to download and share on social media, along with caption ideas. Choose your favorite and post it alongside a photo of your loved one living with PWS to help amplify our community’s voice.

Whether you post on Rare Disease Day (February 28, 2025) or in the days leading up to it, your participation helps shine a light on PWS and the urgent need for research, resources, and support. Let’s show the world the strength of our community—one post at a time!

Here’s how to participate:

1. Download one of our Rare Disease Day graphics by clicking your favorite image below, then right-click, and save the graphic to your computer.
2. Post your preferred graphic on social media with a photo of your loved one.
3. Use the hashtags #RareDiseaseDay, #PWSAwareness, and/or #PWSProud to join the movement! We also encourage you to tag @PWSAUSA in your post. You can find us on Facebook, Instagram, X (Twitter), and LinkedIn.
4. Click the button below for social media caption ideas or write something of your own!

15 Ways to Raise Awareness for Rare Disease Day & Prader-Willi Syndrome

Every voice matters in the fight for rare disease awareness! Whether you’re sharing a personal story, lighting up a local landmark, rocking zebra print, or simply starting a conversation, you can help bring attention to Prader-Willi syndrome and the challenges faced by the rare disease community.

There are so many meaningful ways to get involved leading up to and on Rare Disease Day, February 28, 2025—from organizing a “Wear Jeans for Rare Genes” event to donating a PWS book to your local library. No action is too small, and together, we can make a big impact!

Need inspiration? We’ve put together 15 ideas to help you raise awareness and show your support. Download our “15 Ways to Raise Awareness Rare Disease Day Toolkit” at the button below.

Make an Impact This Rare Disease Day!

Rare Disease Day is not only a time to raise awareness—it’s also a powerful opportunity to support the future of the PWS community. For 50 years, PWSA | USA has been a lifeline for families, providing essential advocacy, medical and crisis support, research funding, and resources that change lives. With your help, we can ensure we’re here for the next 50 years and beyond.

How You Can Give Hope:
– Make a donation at the button below to support families navigating PWS. Every gift, no matter the amount, fuels our mission!
– Host a Rare Disease Day fundraiser on our Hope United website—it’s quick, easy, and a great way to engage your community in making a difference.

How to Create a Rare Disease Day Fundraiser:
1. Visit our Hope United website and look for the Rare Disease Day fundraiser option.
2. Click “Fundraise” in the Rare Disease Day box and follow the simple steps to set up your page.
3. Share your fundraiser with friends, family, and your network to rally support for PWSA | USA!

Have questions? We’re here to help! Email us at hopeunited@pwsausa.org.

PWSA | USA is Heading to Capitol Hill for Rare Disease Week

PWSA | USA staff and volunteer advocates are once again joining the EveryLife Foundation’s Rare Disease Week on Capitol Hill—a powerful event that brings together rare disease advocates from across the country to meet with legislators and fight for policies that improve the lives of those with rare diseases.

Why is this important for the PWS community?
– Raises awareness of Prader-Willi syndrome among policymakers
– Advocates for legislation that supports medical research, treatment access, and disability rights
– Ensures the PWS community has a voice in shaping policies that impact our loved ones

By participating, PWSA | USA is making sure that Prader-Willi syndrome is part of the national rare disease conversation. Our community’s stories matter, and our advocacy efforts help drive change for better healthcare, resources, and support.

Watch the recap video from last year’s Rare Disease Week and see our advocates in action!

Rare Disease Day FAQs

What is the History of Rare Disease Day?

Rare Disease Day was first launched in 2008 by EURORDIS (European Organisation for Rare Diseases) and its partner organizations to raise awareness for rare diseases globally. The initiative began as a European event and quickly grew to encompass countries around the world, including the United States.

The goal of Rare Disease Day is to create a common day of recognition for the millions of people living with rare diseases and to raise awareness about the challenges they face. This day provides a platform to highlight the need for more research, better healthcare access, and improved policies that support rare disease communities.

Since its inception, Rare Disease Day has become a global movement, with thousands of events held across over 100 countries each year. The last day of February was chosen as the date for Rare Disease Day because it is typically the rarest day of the year—February 29th, only occurring every four years.

The day serves as an opportunity for individuals, families, healthcare professionals, researchers, and advocates to come together and raise their voices for those living with a rare disease.

What is a Rare Disease?

A rare disease is defined in the U.S. as a condition affecting fewer than 200,000 people at any given time. While each rare disease impacts a small percentage of the population, there are over 7,000 rare diseases, collectively affecting more than 30 million Americans—nearly 1 in 10 people.

How does Prader-Willi syndrome compare to other rare diseases?

Prader-Willi syndrome (PWS) is one of these 7,000 rare diseases, affecting an estimated 12,000–20,000 people in the U.S. each year. Here’s how that compares to a few other rare conditions:

How Many Rare Diseases Have a Treatment or Cure?

Of the 7,000+ known rare diseases, more than 90% do not have an FDA-approved treatment or cure. That means millions of people, including those with Prader-Willi syndrome, rely on supportive care, symptom management, and advocacy efforts to improve their quality of life.

For many rare diseases, progress depends on:
– Increased research funding to develop treatments
– Faster approval processes for promising therapies
– Stronger policies to improve access to care and services

What Categorizes a Disease as a Rare Disease?

In the United States, a disease is classified as rare if it affects fewer than 200,000 people at any given time. This definition comes from the Orphan Drug Act of 1983, which was created to encourage the development of treatments for rare diseases. Even though individual rare diseases affect small numbers of people, there are over 7,000 rare diseases worldwide, impacting more than 300 million people—making rare diseases collectively not so rare.

Why is the Zebra the Symbol for Rare Disease Day?

The zebra is the official symbol for Rare Disease Day and the rare disease community because of the medical adage:

“When you hear hoofbeats, think horses, not zebras.”

Doctors are often taught to assume common diagnoses first (horses) rather than rare conditions (zebras). However, for those living with rare diseases like Prader-Willi syndrome, this mindset can lead to delayed diagnoses, misdiagnoses, and overlooked medical needs. This Rare Disease Day, wear your zebra print and help raise awareness for the 1 in 10 Americans living with a rare disease!

Why is it Important to Raise Awareness for Rare Diseases like PWS?

– Rare diseases often go undiagnosed for months or even years due to limited awareness and medical expertise.
– Many rare diseases, including PWS, have no cure and require lifelong management.
– Research funding is limited, making advocacy efforts essential to drive scientific progress.
– Stronger policies can improve care, access to treatments, and quality of life for individuals with rare diseases and their families.

This Rare Disease Day, you can help put Prader-Willi syndrome on the map by raising awareness, advocating for change, and supporting the PWS community.