The Manton Center for Orphan Disease Research
Meghan Connolly, MS, CGC
Meghan obtained her Masters in Genetic Counseling from Boston University and assumed the role of Research Coordinator of The Manton Center for Orphan Disease Research. Meghan's thesis work entitled "How Do Personal Relationships with Other Individuals with Treacher Collins Syndrome Affect a Patient's Self-esteem?" examined the impact that patient networking has on the overall quality of life for an individual. Treacher Collins syndrome is a rare craniofacial disorder affecting approximately 1 in every 30,000 individuals, and therefore many individuals with Treacher Collins syndrome may never meet another person with the same diagnosis. This work emphasized Meghan's personal interest of patient advocacy as a means to provide well-rounded and complete care for patients.
During her graduate studies, Meghan worked on several research projects in the Program in Genomics at Boston Children's Hospital as a student intern. At this time she was made aware of the continuing need for genetic counselors as patient liaisons in the research world. Her work at The Manton Center connects her passion for patient advocacy with the underserved and understudied population of individuals and families affected by orphan diseases. Meghan serves as the contact point between The Manton Center and patients and referring physicians. She coordinates recruitment and helps with the needs of the patient to provide the best well-rounded care possible.
You can contact Meghan with questions or comments about The Manton Center at firstname.lastname@example.org