LYNKED IN Lynch Syndrome Patient Conference
LYNKED IN is an annual, one-day educational conference for individuals with Lynch syndrome, their families, and caregivers, hosted by Dana-Farber’s Lynch Syndrome Center. The goal of the conference is to connect and empower Lynch syndrome families. All are welcome!
This program provides attendees with:
- Updates on guidelines for screening and prevention
- Strategies for communicating one’s cancer risk with family
- Information about the latest advances in the treatment of Lynch syndrome
- Opportunities to connect with other Lynch syndrome families
*This conference is free of charge due to the funds raised by Team Lynch Syndrome. If you are interested in fundraising or joining Team Lynch Syndrome, please visit our Team Lynch Syndrome Jimmy Fund Walk page.
2023 Lynch Syndrome Patient Conference
Hosted by Dana-Farber Cancer Institute’s Lynch Syndrome Center, the 8th Annual LYNKED IN conference for individuals and families of those with Lynch syndrome was held on July 29, 2023. This year's conference featured question-and-answer sessions, updates on dietary research in Lynch syndrome, and more.
If you have any questions, or would like information about future conferences, please email us at LynchSyndromeCenter@dfci.harvard.edu.
View video coverage of presentations from past LYNKED IN conferences:
- 2022 conference
- 2021 conference
- 2020 conference
- 2019 conference
- 2018 conference
- 2017 conference
- 2016 conference
Online Resources
- Patient Support Resources at Dana-Farber Cancer Institute
- Doctor-approved patient information from the American Society of Clinical Oncology (ASCO)
- Support organizations on Lynch Syndrome International's website
- Lynch Syndrome/HNPCC support group on Facebook
- Jacqueline Rush Foundation
- AliveAndKickn — a hereditary cancer foundation
- FORCE: Facing Our Risk of Cancer Empowered
- National Organization of Rare Diseases (NORD)
- How Lynch Syndrome Derailed my Family's Health | Helen Lieberman - TEDxPhillipsExeterAcademy
Patients Helping Patients
Team Lynch Syndrome (formerly Team Sandi) is our Center's team for Dana-Farber's Jimmy Fund Walk, now in its tenth year. Since 2013, Team Lynch Syndrome has raised close to $200,000 for Lynch syndrome research at Dana-Farber. One hundred percent of the proceeds raised by our team directly support Lynch syndrome research and national education efforts to raise awareness of this rare disorder, including funding our annual LYNKED IN Lynch Syndrome Patient Conference.
Team Lynch Syndrome was founded to honor Sandi Braune, a patient of Dr. Sapna Syngal, who passed away from colon cancer in 2003 shortly after discovering she had Lynch syndrome. The team comprises Lynch syndrome previvors (patients who have not had cancer but have tested positive for a mutation in one of the mismatch repair genes that cause Lynch syndrome), Lynch syndrome cancer survivors, non-carrier relatives, friends, and Dana-Farber staff, and is a great way to connect with other individuals with Lynch syndrome.
Support the Lynch Syndrome Center
Your support can help advance research and provide care for individuals with Lynch syndrome, contributing towards:
- Creating lasting educational materials and tools for the community
- Hosting Fellows focused on Lynch syndrome patient care and research, to help us mentor and train the next generation of Lynch syndrome experts
- Launching an interactive, patient-focused website with forums, support groups, event announcements, and news
- Implementing patient-driven cancer risk assessment tools in clinical practices, so patients can assess their individualized risk for Lynch syndrome via a user-friendly web application
- Putting together an American Medical Association-accredited physician-focused Lynch Syndrome Conference with educational talks
- Organizing the annual patient LYNKED IN Conference, started in 2016, where patients can learn about the latest research and clinical management of Lynch syndrome
- Hiring staff, such as additional nurse navigators to assist and support patients more closely; a program coordinator to support Center operations; and clinical and support staff to manage Lynch syndrome patient clinical care and research study appointments
Naming opportunities for the Center are also still available. For more information, contact Angelle Kettlewell at angellem_kettlewell@dfci.harvard.edu or 617-632-5027