RARE Global Advocacy Alliance Member Spotlight: Ann Fixari

Organization Name: A Kid Again

Disease Affiliation: Life Threatening Conditions

Organization Mission: We exist to foster hope, happiness, and healing for children with life-threatening conditions and their families.

What led you to the rare disease community?
Our Founders & their passion for serving children with life threatening conditions.

What do you think are the areas that are lacking in the community (specific to your org or in general)?
We often see that certain life threatening conditions may have more support options. Our families may have children with various conditions, but understand hospital stays, multiple doctor appointments, pain points with insurance companies, left-out siblings, and more, so all our families are able to find common ground.

What do you think are the areas that are lacking in the community (specific to your org or in general)?
We often see that certain life threatening conditions may have more support options. Our families may have children with various conditions, but understand hospital stays, multiple doctor appointments, pain points with insurance companies, left-out siblings, and more, so all our families are able to find common ground.

What are your areas of expertise?
Adventures, which are ongoing group activities for families raising a child with a life threatening condition. Experience for families that are more than just tickets and parking, but time together as a family creating memories. We strive to think of everything so families can enjoy the day. In addition, to in person Adventures we provided Adventures In A Box until we are able to reach families with in person Adventures. Fun filled activities sent directly to the homes of our families.

Please describe any major milestones your organization has hit or has coming up that you are proud of.
A Kid Again is now serving families in all 50 states & now serving over 47,000+ people!

What is your hope for the future for rare diseases?
Our vision is for every child in America with a life-threatening condition can be A Kid Again.

Learn more about the Global Advocacy Alliance. If your organization is already a member of the Global Advocacy Alliance and would like to be considered for a spotlight in a Global Genes monthly newsletter, please fill out the Global Advocacy Alliance: Member Spotlight Form.