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February 29 is the rarest day of the year – and this year it is also Rare Disease Day! And throughout the entire month of February Coastal Kids Home Care is excited to share the stories of some of our many patients who are living with rare diseases and how access to home-based nursing and palliative care makes a difference in their lives.  

According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans. This equates to 1 in 10 Americans! Many rare diseases are genetic. Some are apparent at birth, while others do not appear until later in life. Approximately two-thirds of Americans with rare diseases are children. At Coastal Kids Home Care more than 75% of the pediatric patients that we care for each year are living with a rare disease. 

Some of our patients are living with rare diseases that are recognizable by name, such as cystic fibrosis, while others, like CHARGE Syndrome, are less well known. Most pediatric cancers are rare. There are rare neurological and neuromuscular diseases, metabolic diseases, chromosomal disorders, skin diseases, bone and skeletal disorders, and rare diseases affecting the heart, blood, lungs, kidneys, and other body organs and systems. At Coastal Kids Home Care, we see every one of our pediatric patients as special – and this month we are honored to share with you the stories of some kids who are truly one in a million! 

The We Care for Rare campaign will highlight some of these extraordinary kids and the talented team at Coastal Kids Home Care who make it possible for them to thrive at home. Get ready to hear some amazing stories!

Interested in getting involved? See below.  

Ways to Support Rare Disease Day...

  • Donate online in honor of someone who is rare

    --->CLICK HERE

  • Snap a pic of you wearing your jeans this month and send to us!

    --->Download the "Why I #WEAREJEANS4RAREGENES" flyer (shown below)

    --->Take a picture holding it and let us know your why!

Download PDF • 195KB


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