Vicky Carter

Tell us about your experiences of rare conditions:

I have a young daughter who was born with a combination of rare conditions. Most rare conditions are genetic but hers are not. This makes her even rarer! I also have rare conditions myself and have a lot of experience of advocating for my daughter and myself.

Why did you put yourself forward to join the We R Rare Steering Group:

I joined the We R Rare Steering Group because it was my opportunity to share my experiences and help the patient and parent voice to be heard. A lot of people with rare conditions do not have the same journey and do not fit into the standard textbook boxes. I wanted to share my unique experiences and insight to help others and ultimately help change people’s perceptions of rare conditions.

What would you like to see changed in the future of rare conditions? 

In the future I hope that people with rare conditions are listened to and heard. We live with this everyday of our lives and I hope to educate and spread awareness. Having a rare condition is very isolating, let’s change this!