Did you know that the Zebra is a symbol for rare diseases? Or that the last week of February is Rare Disease Week and it’s celebrated all over the world. Thirty million Americans are affected, nearly 1 in 10 people or 10% of the population. Worldwide over 300 million people are affected and yet most of these diseases are neglected and represent many medical challenges.

Thirty million Americans are affected by rare diseases and over 300 million people Worldwide.

With these things in mind, rare disease advocates set out to raise awareness of their specific rare disease every February. Many patients and families participate in Rare Disease Week on Capitol Hill in Washington, D.C. This gives them the opportunity to meet other patients and discuss policies and their concerns with legislators.

Patients and family members have become very creative in using the Zebra to get attention and this gives them the opportunity to start a discussion and share information about their disease. As posted on the Facebook page for Hope the Zebra, the goal is to bring the rare disease community together by sharing hope, laughter and support.

Hope the Zebra came to be after an advocate who was in Washington, DC decided to wear a zebra outfit just for fun. The attention the zebra received brought much laughter but more importantly gave advocates the opportunity to raise awareness. They decided the zebra needed a name and “Hope” came into being. As you can imagine being diagnosed with a rare disease is scary and lonely but Hope has been able to provide patients and families with a reason to smile, even if just temporary.

This past February, Hope was at it again in DC and family and friends joined in on the fun. We hope that you enjoy these photos as much as we do. For more information on rare diseases please visit the National Organization for Rare Diseases or Global Genes and don’t forget to follow Hope the Zebra on Facebook.

For more information on rare diseases please visit the National Organization for Rare Diseases, Global Genes or RDLA and don’t forget to follow Hope the Zebra on Facebook.

 

Leave a comment