RARE Toolkits

Below is a list of all of our current RARE Toolkits.




No one will tell you that being a teenager is easy.  Under the best of circumstances, teens struggle with trying to fit in, peer pressure, battles with parents, dating, academics, anxiety over the future and more. As a teen living with a chronic medical condition, you face all of the challenges of being a teenager, as well as, added physical, psychological and emotional challenges that your peers cannot even begin to imagine.

This toolkit is designed to help you navigate the emotional hurdles of being a teenager with a rare disease. More specifically, it seeks to provide individual tools that you can use at school, at home and in social situations.


The years between puberty and adulthood are known as adolescence. It is a time of intense intellectual, emotional and social development and moving from childhood to adulthood.  It is a time of forging your own identity independent of your parents.

For most, thirteen is a big birthday. “I’m a teenager!” The years between 13 and 19 may hold some of the best moments of your life. They will likely also be the most difficult. Middle school is filled with landmines raging hormones, kids experimenting with drugs, alcohol and sex. High school is notorious for its cliques. There are the cool kids, the jocks, the nerds and more.  And the simple fact that everyone is at various stages of physical and emotional maturity further muddies the waters. Add the simple biological fact teenagers’ brains are not fully developed and that everyone is developing on a different timetable and you are in for one long socially awkward ride on an emotional rollercoaster.

The good news is every single teen is along for the same ride. You probably know someone who seems to have it all, good looks, popularity, athletic ability and more. Despite appearances, trust that they too have issues with self-esteem and self-confidence. The truth is no one escapes being a teen without a few battle scars and bruises.

As a teen living with a rare disease, you have likely already survived more than your fair share of battle scars and bruises, which may provide you with distinct advantages. On the other hand, what every teenager wants most is to fit in and be accepted. The very nature of living with a rare disease sets you apart from your peers.