42 Years of Care and Ensuring No One Fights Alone!

February 29th is Rare Disease Day

February 29th is Rare Disease Day. In the United States alone, according to the National Organization for Rare Diseases (NORD), at least 25-30 million individuals fight invisible battles against rare diseases. That’s right, millions. But what defines “rare”? By NORD’s definition, it affects less than 200,000 people in the US, although different countries may have varying thresholds. Consider conditions like Neurofibromatosis, impacting 1 in every 2,000 births according to the Children’s Tumor Foundation – a stark reminder that rare doesn’t mean isolated.

Joining the Conversation:

Rare Disease Day isn’t just about statistics; it’s about action. Here’s how you can make a difference:

  • Share your story: If you’re comfortable, use your voice to raise awareness. Even anonymously, your experience can help others feel less alone.
  • Become an information hub: Share details about local and national rare disease advocacy organizations like NORD or the Children’s Tumor Foundation.
  • Get creative: Organize a DIY fundraising event and donate the proceeds to your chosen non-profit. Every bit counts!
  • Connect with community: Find local Rare Disease Day events near you. Sharing the journey strengthens everyone.

Beyond February 29th:

Remember, advocacy doesn’t have to wait for the rarest day. Let’s continue the conversation and support those living with rare diseases throughout the year. Together, we can shine a light on their challenges and champion their needs.

Together, let’s make every day a Rare Disease Day of awareness, empathy, and action.

Leave a Reply

<< View More

Get the Latest NF News & Updates

Sign up for our blog and always be up-to-date with Neurofibromatosis

Visit Us
Follow Me