Do you ever find it difficult to inform your physician about your rare disease–from symptoms to research to finding support to cope with your diagnosis? Navigating communication between you and your healthcare team at times can be challenging, but working together is important in your rare disease journey. This Webinar will offer insight from both the healthcare provider and patient perspective on how to effectively discuss your rare disease and build a strong healthcare team together.
If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.
Don’t forget, to access this webinar use the password: “Rare” with a capital “R”
Jodie M. Vento, MGC, LCGC, Manager, Brain Care Institute & Center for Rare Disease Therapy
As a college student, Jodie dreamed of a career that would combine her interest in cutting-edge science with her desire to connect with patients and families.
After completing her undergraduate degrees in biology and psychology at the University of Pittsburgh in 2005, Jodie earned a Masters in Genetic Counseling from the University of Maryland Medical School in Baltimore in 2008. She worked as a genetic counselor and neurogenetics program coordinator at Children’s National Medical Center in Washington, DC, before joining Children’s Hospital of Pittsburgh in 2012.
Jodie is frequently the first point of contact for families who call or email the Center. In many cases, those families are confused and in need of answers. They have a very sick child for whom they may not have a diagnosis despite having seen multiple doctors. Or they may have been given a diagnosis of a disease they have never heard of and been told is very rare.
Now, as manager of the Center for Rare Disease Therapy at Children’s Hospital of Pittsburgh of UPMC, she says she has her dream job.
Gail Moore, Senior Manager, Patient Advocacy, Horizon Pharma, Inc.
Gail is advocacy professional with a passion for patients and over 20 years of experience in the area of rare diseases. She became involved in rare diseases after the diagnosis of her children and subsequently herself with a Primary Immunodeficiency. Soon thereafter, she began volunteering with the Immune Deficiency Foundation, where she provided peer support and developed their Family Retreat Program. Currently, she works as the Senior Manager, Patient Advocacy at Horizon Pharma where she advocates for patients, raising disease state awareness, and works closely with patient organizations identifying opportunities for patient education and addressing patient’s unmet needs. Prior to joining Horizon Pharma, she held a similar position at Grifols, Inc.
Gail has a Bachelor of Arts in Psychology from Saint Leo University. She has two grown children and lives in Lakeland, Florida with her 3 dogs, Jaxson, Riley & Boku.
Daniel Levine, Founder & Principal, Levine Media Group
Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.