Help for a better tomorrow

Empowering patients and families through education, community building, advocacy and support of research.




Understanding Cystinosis

Join us in making an impact among those living with Cystinosis

Latest News, Blog Posts and More

Rare Disease Day

Tomorrow marks Rare Disease Day and what better way to get started than by sharing Trudy’s story. More than 300 million people worldwide live with a

Feeding Tube Awareness Week

Feeding Tube Awareness Week was held 5-11 February 2023.  To help support #FTAW2023 we put together a list of books dedicated to children who may require a tube

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