Sibling Support

We know that FOP impacts the entire family unit. Siblings of a brother or sister with FOP will learn many ways to bounce back from life’s challenges. This year's sibling day activity was centered around providing artwork and an activity to serve as a helpful resource for siblings to discover some common and personal values to ground them during life’s difficult moments. Our values help us make sense of life by serving as definitions for what is most important. These definitions guide our actions, behaviors and remind us that it matters how we react to life events. Philosopher Friedrich Nietzche said “If you know the why, you can live any how.”

Access a kid-friendly activity to learn about different values that are important to your child here.

Find Your Why

Click on the images below to downloads this year's sibling appreciation artwork and activity!

Sibling Support Resources

NORD RARE Edu hosted a recent webinar on The Rare Sibling Experience. During the presentation they discussed topics like how to balance the care of healthy and rare children, how to foster strong sibling bonds and how to navigate the challenges that can arise in a rare sibling dynamic.

The Sibling Support Project is a national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental, health, and mental health needs. Their Sibsshops hosted throughout the United States, Canada as well as in Hong Kong, Japan, Mexico, New Zealand, Argentina, Ecuador, Iceland, Ireland, England, Italy, Malta, Singapore, and Turkey provide a space for siblings to:

  • connect with other sibs (usually for the first time)
  • have fun and play games
  • talk about the good and not-so-good parts of having a sib with special needs and
  • learn something about the services their brothers and sister receive.

Learn more and find a Sibshop near you at

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