RARE Toolkits

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


Becoming an adult is often marked by changes and challenges. Teens with rare or undiagnosed diseases know this all too well. And although they may know a lot about their conditions, many struggle with moving towards greater independence.

This toolkit will support rare disease families and their children who are approaching adulthood by covering the steps they should take to become more independent, strong, and proactive individuals.

Becoming a Young Adult

Early adulthood (ages 15 to 26) is a time of discovering what it means to be independent, exploring different educational and career pursuits, traveling, forming relationships, and taking more responsibility for one’s own health. Young adults with rare or undiagnosed conditions may yearn for a sense of independence, but feel anxious about what the future will hold.

Building Self-Confidence

Between managing their condition, frequent hospitalizations, fatigue, or disease flares, it is not uncommon for young adults with a rare disease to struggle with self-esteem or worry about how others perceive them, especially when they see their friends or siblings moving at a different pace.

Quote Mark

[My daughter] Anna is about to graduate high school, but her biggest challenge with becoming an adult is having people recognize her as one. She is petite, due to the lysosomal storage disease she has, and it is easy for people to believe she is only 12 or 13 years old. She tolerates it well, but I know it frustrates and even embarrasses her a little.


Jackie James

Parent of a Child with Mucolipidosis Type III


Cultivating a strong sense of self-confidence will help foster an even stronger sense of humor and resilience. There are plenty of ways to bolster a strong sense of self-confidence, including:

• Connecting with Others Like You: Joining a support group, either online or in person, can be liberating. It is an avenue to reach others, learn best practices, and share stories. Knowing that others go through similar struggles can be encouraging. To learn more about the value of other patient advocates and resources to help find patient advocacy organizations, visit the Parenting a Child with a Life-Limiting Illness Toolkit.

• Developing an Elevator Pitch: Many young adults get tongue-tied when it comes to sharing their story with others. A muddled explanation about symptoms or medical equipment can lead to more confusion. By developing a brief explanation of the disease ahead of time, young adults will feel more confident when approached by others who are unfamiliar with their condition. Unsure of what to include in an elevator pitch? Let’s Feel Better, a rare disease patient blog, offers different tips for explaining a disease quickly and easily.

● Honing an Identity Outside a Diagnosis: Although it may feel like an all-consuming part of a young person’s life, it’s important to remember you are not your disease. Try to find other interests and pursuits in life: a career, cooking classes, a sports team, and neglected talents. Find what makes you happy. Don’t know where to start? Buzzle has a list of hobbies broken down by category.

Managing Treatment and Coping with Disease

Achieving good health and well-being can take some effort, and those with rare and undiagnosed conditions may feel encumbered by their symptoms.

“It’s hard enough being healthy and transitioning to adulthood, but now you add in a rare disease or any illness and it turns into a whole new ballgame,” says Kathi Kayo, Founder of The IHope Foundation. “It feels like it takes twice the effort to get anything done, but I’m doing my best.”

By being proactive and learning important self-care techniques, you may feel more comfortable with this transition process too. Some examples of these techniques include:

● Asking questions about medications, such as, What are the side effects? What is the correct dosage? Will other medications interfere with this one?
● Learning to book appointments regularly and on time to avoid emergencies
● Being aware of the number of medications left and picking up refills before they run out
● Keeping up to date on new treatments, and reading reviews and comments from other patients
● Keeping track of medical records, including exam reports, test results, medication lists, and allergies. See Becoming an Empowered Patient: A Toolkit for the Undiagnosed for more information about managing medical records.

Having a rare disease can be limiting, and young adults may want to adopt practices to cope with problems and concerns related to their illness.

“It’s important to cope. For me, coping was found in writing. It might take some time to find what works best for you, but there’s something out there,” says Alyssa Zeigler, board member of Hereditary Colon Cancer Foundation. “Don’t be afraid to tell people about your disease. Having someone to talk to about whatever emotions I felt about having my disease was better than keeping my feelings to myself.”

Some recommended coping strategies include:

● Talking to friends
● Participating in support groups
● Seeking out therapists who specialize in chronic illness
● Keeping a record of symptoms, possible triggers, and their levels of severity. Find additional information and tools for creating your own care notebook in the Becoming an Empowered Patient: A Toolkit for the Undiagnosed.
● Bringing any concerns to a doctor and talking through new treatments and solutions