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  • June 12, 2026 at 10:05 am #27638 Reply
    katarzyna_nowak
    Participant

    My child was diagnosed with a rare condition. 👶 How do parents cope and advocate?

    Supporting a child with a rare disease

    Self-care for parents

    Aspect Support
    Information 📚 Learn about the condition
    Care team 🩺 Multidisciplinary experts
    School 🏫 Educational support
    Community 🤝 Other families help
    • Ask for help
    • Connect with other parents
    • Take breaks

    What supports your family most? 💛

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