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Rare Disease in Children

Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!

  1. I was diagnosed with my rare diseases when I was 8 and 10. I had a very difficult time coping with all my medical experiences and it wasn't until I agreed to attend counseling as a teenager that I began to start processing and learning healthier coping skills. These experiences are what ultimately led me to my passion of helping others navigate their chronic illness.

    1. , thank you for sharing. As a caregiver, I think counseling should be standard for children living with a rare disease. I am so glad to hear that you appreciated your experience.

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