Rare Disease Day 2020: Raise Awareness & Improve Access to Treatment for Individuals with Rare Diseases

Rare Disease Day 2020 will take place on February 29th of this year, putting a spotlight on H-ABC and other conditions like it.  

For individuals in the rare disease community, this annual event is one of the most important days of the year. However, those of us at the Foundation to Fight H-ABC understand that it’s not on everyone’s calendar. 

That’s why we wanted to take this opportunity to explain what Rare Disease Day 2020 is about and how you can get involved!

What Is Rare Disease Day?

Rare Disease Day is an annual event dedicated to the following:

  • Raising awareness about rare diseases and those affected by them

  • Improving access to treatment for individuals with rare diseases

  • Advocating for medical representation for those with rare diseases

The event takes place on the last day of February. Rare Disease Day 2020 is scheduled for February 29.

The National Organization for Rare Disorders (NORD) is the official sponsor of the U.S. event. NORD’s sister organization, the European Organization for Rare Disorders (EURODIS), is also a sponsor and organizes the international campaign.   

Although individuals and organizations in the rare disease community seek to educate, inspire, and involve others every day of the year, Rare Disease Day is a time when we join forces.

By coming together, the voices of those affected by rare diseases ring louder!    

How Did It Start?

Rare Disease Day was first observed in Europe on February 29, 2008—a “rare” date that happens once every four years. EURODIS and its Council of National Alliances then established it as an official event. A year later, EURODIS asked its sister organization, NORD, to sponsor the event here in the United States.

As of 2019, more than 100 countries across the globe have started to participate. Rare Disease Day 2020 is expected to be bigger than ever!

Why Is It Important?

Rare Disease Day is important because it draws much-needed attention to rare diseases and those affected by them. Here in the United States, any disease with fewer than 200,000 sufferers is considered rare. In Europe, a disease is categorized as rare when it affects fewer than 1 in 2,000 people.

Most people don’t realize how prevalent or troubling such conditions truly are, which is why it’s worth taking a look at some of the facts...   

Fact #1: Rare diseases aren’t so “rare.”

  • So far, more than 7,000 rare diseases have been discovered.

  • In the United States, rare diseases affect 25-30 million Americans.

  • It’s estimated that 350 million people worldwide are affected by rare diseases.

Fact #2: Rare diseases have a particularly large impact on children. 

  • More than half of those Americans affected by rare diseases are children.

  • Approximately 30% of children with a rare disease don’t live to see their 5th birthday.

  • Roughly 70% of rare genetic disorders begin in childhood.

Fact #3: Rare diseases are often difficult to diagnose and treat.  

  • On average, patients with rare diseases visit more than seven doctors before receiving an accurate diagnosis.

  • Of the rare diseases that have been identified in the U.S., more than 90% don’t have an FDA-approved treatment—including H-ABC.

  • Genetic testing helps in identifying many rare diseases, but not all of them.

As each rare disease affects a “small” number of people, pharmaceutical companies don’t see the value in developing drugs and treatments. Moreover, failure to prioritize research into rare diseases has led to many conditions going largely ignored.

This isn’t right, and this is why Rare Disease Day was created.  

At the Foundation to Fight H-ABC, we strongly believe that just because a disease is rare doesn’t mean it deserves less attention or scrutiny—a belief that others in the rare disease community share and one that, hopefully, you agree with too!

How to Make an Impact on Rare Disease Day 2020

If you have a heart to help those affected by rare diseases such as H-ABC, there’s no better time to get involved than now. Here are a few ways you can make an impact on Rare Disease Day 2020…

1) Wear and/or display stripes.

Fight H-ABC Rare Disease Day.jpg

The zebra is the official symbol of rare diseases in the United States, as it represents the uniqueness of all rare diseases and every individual affected. The theme for Rare Disease Day 2020 in America is “Show Your Stripes,” which you can do by…

  • Wearing striped attire and encouraging others to do the same

  • Encouraging your workplace to do a large-scale stripe project

  • Featuring zebra stripes on your website in honor of rare diseases

2) Get the word out on social media.

One of the primary goals of Rare Disease Day is to spread awareness about rare diseases and those affected by them. Using social media to get the word out about H-ABC and other rare conditions is a great way to involve your friends and followers too!

Try…

  • Changing your profile photo to include stripes

  • Uploading a photo of yourself wearing stripes and adding the hashtags #ShowYourStripes, #rarediseases, #RareDiseaseDay, #FightHABC, and #SaveAChild

  • Writing a post about the need for support and adding the hashtags #ShowYourStripes, #rarediseases, #RareDiseaseDay, #FightHABC, and #SaveAChild

  • Creating a short video about your desire to help those with H-ABC and adding the hashtags #ShowYourStripes, #rarediseases, #RareDiseaseDay, #FightHABC, and #SaveAChild

3) Share information about rare diseases such as H-ABC.

Educating others about rare diseases such as H-ABC is crucial; otherwise, these conditions go unnoticed. Consider sharing one of our articles on social media, sending a link to our website via email to friends and family members, or distributing our fact sheet to those you know. 

4) Volunteer as a peer advocate.

Simply volunteering your time as an advocate to raise awareness of rare diseases can make a huge difference. The more attention a condition receives, the greater the likelihood of funding research for a cure.

For instance, you can create a personal fundraising page or host an event for H-ABC.

5) Donate any amount you can.

By giving any amount to the Foundation to Fight H-ABC, you can help fuel research efforts and give children with H-ABC a fighting chance!

Additionally, you can donate to NORD and assist them in providing resources to those in the rare disease community.

Takeaway

With Rare Disease Day 2020 right around the corner, now is a great time to show your support for those affected by H-ABC and other rare diseases. 

Remember that just because a disease is rare doesn’t mean it deserves less attention or scrutiny. To donate or volunteer as a peer advocate for the Foundation to Fight H-ABC, click HERE.