February 28th

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Rare Disease Facts: (Source: Global Genes)

• 1 in 10 Americans’ lives are affected by a rare disease
• 10,000 distinct rare diseases exist today
• 80% of rare diseases have identified genetic origin
• 95% of all rare diseases do not have a single FDA approved drug treatment

The zebra was chosen to represent rare disease based on a quote from Dr. Theodore Woodward: “When you hear hoofbeats, think horses, not zebras.” and “When you hear hoofbeats behind you, don’t expect to see a zebra.” Dr. Woodward used this metaphor to teach the diagnosis of diseases.

To help our community celebrate Rare Disease Day, we are inviting Meadowlark families who are affected by rare diseases to submit a video (by 2/13, of 15 seconds or less). Videos will be featured in the school announcements on Monday, February 27th.

Videos must be 15 seconds or less

• Videos must be submitted to diversity@mavsptsa.org – by Monday, February 13th
• Here are some guiding questions to help you get started:
  • What is your rare disease?
  • Something you do because of your rare disease.
  • What extra steps do you take to manage your rare disease?
  • What is it like having a rare disease?
  • Something you want people to know about your rare disease?

Additionally, students and staff are invited to wear stripes on Tuesday, February 28th, in celebration of Rare Disease Day.