Siblings are often very involved in caring for their brother(s) or sister(s) who have PKU. From an early age, siblings learn what they can eat and what foods they need to avoid –– they often help their parents with care for them. Though it stirs up a lot of different emotions, it can actually strengthen the sibling bond.

Despite that, being a sibling to someone with a rare disease can be tough. It can make them worry, create resentment about how much time parents spend with the sibling with PKU, and anger about how the family’s life revolves around them. These feelings and dynamics can be fleeting, or lingering. They’re important to acknowledge and work through.

Here are some helpful resources:

• The Impact of Rare Disease on Sibling Experience report, helps parents understand how to best support their children without PKU
• NPKUA’s Event Calendar, which includes national and regional events where siblings can meet other families living with PKU. Events
• The Sibling Support Project recognizes, promotes and addresses the life-long and ever-changing concerns of siblings of people with developmental, health, and mental health concerns.
• Siblings with a Mission serves and supports siblings and families of individuals with complex health conditions and developmental disabilities.
• Rare Siblings Stories on Instagram can help siblings find comfort in hearing from others living with similar challenges.
• NORD’s webinars on the Rare Sibling Experience and Panel Discussion