Are you someone who:
- Benefits from 1:1 coaching?
- Wants guidance in identifying advocacy goals?
- Desires extra support in building your advocacy skills and confidence?
Then the RARE Advocates Mentorship Program may be exactly what you need! Applications open in the spring.
What is the Mentorship Program?
Launched in March of 2023, our Mentorship Program facilitates a “mentorship match” and initiates a year-long program. Mentors and mentees will be offered basic guidance and are required to meet virtually at least once to kick off the mentorship and then quarterly throughout the year for a minimum of 5 meetings. The mentor will provide 1:1 support for one year and prepare individuals in various advocacy skill building such as pre and post event support for Rare Across America and Rare Disease Week, help develop their rare disease story for advocacy, or other established as goals.
Mentee Candidates Considerations
- Minimum age of 18
- United States resident
- Someone who benefits from 1:1 learning or support
- Committed to program requirements
- Demonstrates a strong desire to increase advocacy legislative leadership skills
Who are the mentors?
A limited group of outstanding patient and caregiver community members who have leadership background and experience in legislative advocacy. Mentors have participated in Rare Across America and/or Rare Disease Week on Capitol Hill and are well-versed in building relationships with legislators. Many of our mentors have also participated in advocacy education or served in advocacy leadership roles, such as RARE Advocates Training Series, the RARE Young Adults Speakers Bureau, and the RARE Advocates Advisory Committee.
How does the program work?
Both the mentee and mentor are committing to a yearlong program. The pair is required to meet (virtually) at least five times per year. More meetings are encouraged but not required. Mentees are also agreeing to sign up and participate in Rare Across America (hybrid: in person and/or virtual). Personalized advocacy goals will be established during the initial introductory call with your mentor. The pair is expected to actively participate in making progress in the defined goals, for example: responding to communication in a reasonable time frame, attending meetings during established times, and following through with any leadership opportunities discussed (see more on code of conduct).
Important Dates
- Rare Disease Week on Capitol Hill, Washington DC, March 2-4, 2027
- Application for Mentees will open in April 2027
- Mentee acceptance letter and mentor matching notification will be sent out by early June 2027 with kickoff meetings happening shortly thereafter.
- Rare Across America will be in early August 2027
Our Code of Conduct
Both mentors and mentees are expected to treat each other with mutual respect. Advocacy goals and leadership opportunities should be in consideration of the best interests of the rare disease community. Remember that the Mentorship Program is a program of the RARE Foundation, which is a nonpartisan organization. Identified political parties do not have to be discussed or disclosed unless both parties are comfortable.
Have questions? Please contact the Advocacy Team at advocacy@rareadvocates.org.
Meet a few of our past Mentors and Mentees
Cory
“Mentorship sets you up for success. Getting that first-hand experience with someone who could coach you and show you the way to activate your advocacy journey. As a mentor, I hope to give confidence to our mentees and empower their stories.”
Amy
“Even after 21 years as a rare disease mom and 26 years as a school teacher, I struggled to speak publicly about our personal medical challenges. The Mentorship Program paired me with inspiring mentors, offered meaningful training, and helped me connect my lived experience to current legislative priorities. I never knew an organization could help me pave an easier path for other families—and I never imagined finding a like-minded community in the process. I recommend this mentorship program wholeheartedly.”
Paloma
“When I started this journey, I thought that there was some ‘special recipe’ to advocacy, but really, it’s about owning your story and connecting with why your story is a story for all. My goal as a mentor is to help other advocates learn to cherish their story and feel confident using their voice.”
Meet the RARE Advocates Advisory Committee
The RARE Advocates Advisory Committee is comprised of rare disease advocates committed to ensuring that everyone in the rare disease community has a voice and can make an impact on legislation and policy. The committee includes 18 community members and the RARE Foundation’s Vice President of Advocacy.
