Sibling Support

Resources for Siblings of Individuals with FOP

TedTalk speaker Alicia Maples (Recognizing Glass Children) and Sharon Neumann (adult FOP sibling and advanced grief recovery specialist) explore what it means to be a glass child and what adult glass children wish their parents knew about navigating life with a child that has complex needs and a typically-developing sibling.

Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases. In October of 2024 they published the RARE Disease Siblings Resource Guide as a resource for individuals and families and they process the unique experience of being the sibling of an individual with a rare disease or having siblings of a child with a rare disease.

The National Organization for Rare Disorders hosted a webinar in 2021 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.

Literature and Organizations:

  • cover art for a report on the Impact on Siblings of rare diseaseRare Revolution Magazine authored an impact report on the RARE disease sibling experience.
  • 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 https://siblingsupport.org/sibshops/.

  • Siblings with a Mission is an international organization where siblings of individuals with special needs can receive support and exchange stories with others. We serve both siblings and sibling supporters (parents, grandparents, friends, health care providers, professionals, etc.) of all ages and all backgrounds

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!

 

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