RARE Young Adults

RARE Young Adults (Formerly YARR) was established in 2018 by Lindsey Cundiff, Shira Strongin, Taylor Kane and Oakey Daskas. The co-founders initially hoped to create a more robust young adult presence during Rare Disease Week on Capitol Hill. Since then, the program has expanded to include regular advocacy, public speaking, and networking opportunities for young adults in the rare disease community who want to grow and diversify their skills. The first official meet-up was held on July 14, 2018, in Huntington Beach, CA. 

According to the NIH Genetic and Rare Diseases Information Center, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. If you are unsure of the disease you are affiliated with is rare or not, you can always email us at programs@rareadvocates.org.

Absolutely! RARE Young Adults welcomes anyone who has a close personal connection to the rare disease community. This includes patient advocates, siblings, caregivers, family members, friends and loved ones. We do ask that individuals have a personal connection; we do not accept those whose sole connection to the rare disease community is through research or academia. 

Yes. We welcomes applications from young adults who are undiagnosed or navigating the diagnostic odyssey (or whose loved ones are). If you have questions about your individual circumstance, feel free to email us at programs@rareadvocates.org.

Nope! RARE Young Adults has a revolving door membership policy. We accept applications throughout the year. Please allow for up to 30 days for us to review your application. 

This is a volunteer program, and we understand that life happens, particularly for those with rare diseases wrangling full-time jobs or school atop managing their rare conditions. You are free to participate as much or as little as you can. However, the more you participate, the more you will get out of the program. Additionally, we do require all members to commit to one legislative advocacy meeting and at least 3 General Assembly meetings throughout the year. Minimal participation would be estimated to be one hour each month. We are happy to work with you on how to be involved. 

We try and stick to the age range of 16 to 30 years of age to respect the space. However, we are always happy to connect younger members of the community to a RARE Young Adults peer or otherwise provide support. Email programs@rareadvocates.org if you are interested.

Near your 30th birthday, the RARE Young Adults program manager will reach out to you to schedule an exit interview. We will discuss any feedback you want to provide on the program and talk about next steps in your advocacy journey. This is meant to be a ‘soft exit’ with continued support for involvement in RARE Foundation programming and the wider rare disease community.

Of course! Coordinate with the RARE Young Adults program manager for references, school credit or letters of absence related to events, or letters of recommendation. We ask that you reach out to us 30 days before the deadline for a letter of recommendation to ensure we can provide one. It is also helpful to share a recent resume or updates on your professional goals when making a request .

We post regularly on our Instagram account and LinkedIn account if you want to stay up-to-date with all things RARE Young Adults.  We also have a private LinkedIn group for RARE Young Adults Leadership Academy alumni. Members will receive monthly newsletters with opportunities. If you have advocacy highlights or news you would like to share, email the RARE Young Adults program manager. We can add relevant highlights to newsletters and social media to promote your advocacy! 

We will check in with you one year after you join to see what you’ve enjoyed so far and what you might need extra support in. In each year-long period, you should attend at least three General Assembly meetings and one legislative advocacy meeting. You do not need to complete these requirements by the end of a calendar year, especially if you are joining RARE Young Adults in later months. The timeline is unique to you. We can also provide support on additional goals. This is meant to support your advocacy growth, not be a hard set of requirements.