We want to help you at each step of the way.

We understand some of the resources are specific to disorders but many can overlap.

We also have peer support if you just need to talk to someone. Please get in touch.

CanPKU+ would like to offer a zoom chat to allow siblings without the rare to get together and chat. We need more participants to make this happen. Please let us know if this is an interest for you

Downloadable Resources:

Website Links:

PTC Therapies Insightful Moments has created a Siblings Roadmap to help navigate the sibling that does not have a rare disorder

YouTube Video Links:

Events and Webinars:

With all of the fantastic feedback from this program back in November, we are excited to share that PTC’s Insightful Moments webinar:  The Impact of Rare Disease on Siblings:  A Parent Perspective, will be presented for a second time on Wednesday, March 29th at 7:00pm EST. Join them to learn more about some of the common feelings of rare siblings, reactions to look out for, and tips to remind your sibling children that they are seen, loved, and supported. Attached you will find the program flyer with registration details. 

Registration link:

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