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?...Reactions0reactionsComments4 repliesCaregiving
FeaturedBiggest 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...Reactions0reactionsComments52 repliesCaregivingCopingTips & Advice
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....Reactions0reactionsComments3 repliesCaregivingTravel
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?...Reactions0reactionsComments1 repliesCaregiving
Caring for a child with a rare diseaseThis forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions0reactionsComments6 repliesCaregiving
Dont knowMy 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...Reactions0reactionsComments1 repliesCaregiving
Transitioning From Pediatric to Adult CareDoes 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...Reactions0reactionsComments3 repliesCopingCaregivingHealthcare Team