Did you know that the last day in February is known as Rare Disease Day?  Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year!  And Fun Fact, the Rare Disease Day "color" is JEAN! This February we are asking that you #WEARJEANS4RAREGENES to show your support for kiddos who have rare disease.  At Coastal Kids Home Care, we care for rare! Coastal Kids is the only agency providing in-home medical care for kids with rare diseases in this community.

  • Shift nursing for CHARGE Syndrome
  • Blood draws for Hemophilia
  • Life Saving infusions for Muscular Dystrophy
  • Music and Art Therapy for rare and terminal cancers

Follow us on social media to learn more about Rare Disease Day at Coastal Kids Home Care. You will have a chance to meet some of the rare kids we've cared for through the years.  Since 2005, Coastal Kids Home Care has provided more than 76,000 visits to 9,500 medically fragile infants and children with rare illness and disability from Monterey, Santa Clara, San Benito AND Santa Clara Counties. 

Ways to Support Rare Disease Day...

  1. Host a fundraiser at school/work
    • It's easy!  The goal is to have as many people wear their denim on February 28 and donate $5 (or more).  This works great at any location, but especially at private schools and work where the day can become a "pay for free dress" day.  If you have questions, reach out to Outreach Specialist, Cassie, at cwaggy@coastalkidshomecare.org
    • In February of 2020, we challenged local schools to host a "Jeans Day" by inviting them to wear their favorite denim and participate in our #WEARJEANS4RAREGENES fundraiser. Our two schools who fully embraced the #WEARJEANS4RAREGENES campaign surprised us greatly with their support. Palma High School in Salinas, CA raised $1,244 and St. John Vianney in San Jose, CA raised $2,944 ! We also had the People with Disabilities affinity group from Amazon donate $500 in support of our campaign. That brought us to a grand total of $4,688 for the day!!
  2. Purchase your "We Care for Rare" shirt today to show that you care for rare, all year long! #WearJeans4RareGenes #WeCareforRare
  3. Donate online in honor of someone who is rare
    • coastalkidshomecare.org/makeadonation/
  4. Share your story about being rare
    • Email Outreach Specialist, Cassie, at cwagy@coastalkidshomecare.org or send us a message on social media @coastalkidshomecare
  5. Snap a pic of you wearing your jeans this month and send to us!
    • Download the "Why you care about rare" flyer provided by Global Genes HERE

 

We Care for Rare

Meet other Coastal Kids kiddos who have been affected by Rare Diseases by clicking their picture below.

Rare Disease Resources...

 

For more Rare Disease Day resources, visit our resource page at https://coastalkidshomecare.org/resources/

 

The numbers...

 

***Information taken from https://globalgenes.org/rare-disease-facts/