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?
You are never too young to self-advocate. Find resources that you and your family learn how to grow this great skill.
, Great advice! Kids are never too young to learn about self-advocacy skills, and by finding resources that the entire family can learn about together, they won't feel alone in developing these skills 😀 Gina Miller, Team Member 
, so true! If we want others to value and speak for us, we have to value and speak for ourselves first. - Warmly, Donna (Team Member)
such a great question! The two things that stood out to me as a rare disease child is that it helps for not just the child but also the family to attend counseling - individually and family counseling as it affects everyone and their relationships with one another. Additionally, teaching a child how to become a self-advocate is important I think, my mom taught me how to advocate for myself and I've found that invaluable for my care and quality of life.
