Our daughter was dxd with WG when she was in her teens. I prioritized attending the Arthritis Foundation's annual (summer!!) conference for pediatrics over the Vasculitis Symposium because of the fun events for children, the programming offered for siblings (which allows both parents to attend) and the support for parents. Workshops such as "Parenting With More Than One Diagnosis," "Teaching Children How to be Treatment Compliant," "Strategies for Coping with Pain" (ex: teaching a 7 year old how to deal with pain,) or "Working with your Child's School; Educational Rights for Students with Chronic Illness" are what appealed to me.

Money was tight with a significant diagnosis, of course, and so the conferences doubled as our family vacation. (Whee, lolol) Our children made good friends they still keep in contact with; the social component of the conference cannot be over-emphasized. I can get info off of the internet, but for children to have the experience of meeting other kids with hair loss or prednisone bellies was irreplaceable.

I am the co-administrator for a FB group of 95 members whose child has pediatric-onset WG, and I know several other families who are not on FB. Simple math tells you that pediatric-onset WG is a lot more common than believed. Our group talks about meeting up at the Symposium, but it simply hasn't been as pediatric-focused enough for any but one or two to go.

Thanks for asking!!