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Read conversations, start a discussion, and connect with others about rare diseases.

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Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...

What life lessons or advice is important to pass on to children and young adults living with a rare disease?

What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful in your family?...

Do you allow your child with a rare disease to go on overnight school field trips?

If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....

Nags and /or citrine deficiency

Looking for others who have NAGS and or Citrine Deficiency. I'm curious of how are others doing with having these rare diseases/deficiencies?...

Caring for a child with a rare disease

This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....

Dont know

My wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40 pills aday. I have no one to talk...

Transitioning From Pediatric to Adult Care

Does anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for others navigating this, either as a patient or...

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