What is FibroConnect?
Support from someone who has been there can make all the difference. FibroConnect is a free, confidential one-to-one peer matching program that helps patients with fibrolamellar carcinoma, their caregivers or family members connect about shared experiences. Whatever you’re going through, there is someone who has been through a similar experience and can answer questions or offer support. Peer mentors can share their experiences, listen to your challenges, encourage you, and talk about everyday life.
“It’s helpful to be able to talk to someone who has been there and has experienced similar issues during their fibrolamellar journey.”
— Kurt, FLC caregiver
You can request a peer mentor who shares similar age or experiences as you, or can talk about topics that are important to you, such as:
- Dealing with your child’s diagnosis
- Going to college
- Making work/career decisions
- Dating, relationships, and marriage
- Finding balance as a caregiver
- Parenting
- Getting diagnosed as a teen or adult
- Survivor’s guilt
- Coping with systemic therapies
- Dealing with life after treatment
- Bereaving
Peer mentors can serve as a sounding board, and if requested, suggest helpful information and resources. Mentors will not serve as health professionals and can not provide medical, legal or psychological advice. The connection between you and your peer mentor may involve only a few phone calls, or it may develop into a longer relationship — whatever is most helpful for you.
Get started in 3 simple steps
- Click the appropriate link below if you are looking for a mentor or are interested in becoming a mentor.
- The program team will review your submission and match you with someone who best fits your request.
- Connect with your peer over video, phone, email, or text.
Frequently asked questions about the program
- Who is eligible to join? Any patient with FLC or caregiver aged 16 and older is eligible to join FibroConnect.
- Who are the peer mentors? Peer mentors are either adults with FLC or current/former caregivers of people with FLC who have offered to share their experiences. They include men and women from many different regions who have a wide variety of experiences to share.
- How am I matched with a peer mentor? Matches are made by the FibroConnect team. For every person who requests a peer mentor, we look for a peer mentor who has a background similar to yourself and experience in the topics of interest you specify.
- How do I connect with my peer mentor? You can choose to connect over video, phone, email, or whatever method works best for you.
- How long will the peer connect “match” last? The suggested mentoring time period is 3 months and your peer mentor will be available to schedule meetings during that time. If you and your mentor would like to continue communicating after that, you are welcome to connect informally outside of the mentoring relationship. You and your peer mentor will jointly determine how you want to virtually connect and the frequency of connecting. As a best practice, we recommend connecting weekly for the first month and then 1-2 times a month until the 3-month period is over.
- Do mentors give medical advice? No. Mentors may share their personal diagnosis and treatment experiences if asked. However, the volunteers cannot give medical advice or assist patients in contacting medical professionals. Information shared between mentors and patients concerning treatments, medications or therapies should always be discussed with a physician.
- What should I do if it’s not a great match? You can contact the FibroConnect team at fibroconnect@fibrofoundation.org if you would like to be re-matched.
Tips for a successful experience with the program
- Think about what you want to get out of this experience. What questions do you have? Do you want to share your story? Do you want to hear how your mentor handled a similar situation?
- Set aside time to connect with your peer mentor, but don’t expect your peer mentor to be on call or available 24/7. Make appointments for meetings that are convenient for both of you. Let him/her know if you can’t make scheduled meetings.
- Don’t expect peer mentors to know all the answers.
- Don’t ask your peer mentor for medical advice. Consult your care team if you have questions about your diagnosis, treatment or medications.