There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent of these are caused by genetic changes. But genetics is a topic that not all of us are familiar with.
This webinar covers the basics of the underlying genetics of rare disease and provides viewers with the strategies and advice to discuss them with the ones they love.
Panelists will share strategies they have used to explain genetic disease, challenges they faced, and helpful resources.
If you cannot attend this, register anyway, we can send you details on the slides and archived event afterwards.
Jenna Miller, MS, CGC, Genetic Counselor, Recombine
Jenna Miller is a certified genetic counselor at Recombine, a genetic testing company based in New York, NY. She works closely with families seeking preconception and prenatal genetic carrier screening and noninvasive prenatal screening. She also assists physicians and genetic counselors to facilitate appropriate genetic testing procedures. Jenna is passionate about genetics education; her Master’s thesis project involved developing and teaching a Genetics 101 class for student inmates at a maximum security women’s prison. Jenna is an advocate for informed consent, ethical approaches to genetic testing, and support of families affected by genetic conditions.
Cynthia Frank, Director, Patient Advocacy & Meetings, Nat’l Gaucher Foundation
Cyndi is a long-standing member of the Gaucher community and has participated in many clinical trials to help get treatments to market. She is an NGF Mentor and advocate for Gaucher patients and raising awareness through speaking at conferences, meetings and events, including NGF and other rare and genetic disease-organization meetings, LSD symposiums, and industry and pharmaceutical conferences and educational events. She serves on multiple boards and committees for many organizations, including the Global Genes Advocacy Leaders Group and the NGF’s Gaucher Advisory Group.
Janet Mills, Trustee and Patient Advocate, cureCADASIL Association
Janet is often the first point of contact when a new patient is diagnosed with the rare genetic disease CADASIL. She serves on the Board of Trustees of cureCADASIL, and she networks with others in the rare disease community online and at events. She recently spoke about the genetics behind CADASIL on a Los Angeles radio show. Janet has provided content for two RARE Toolkits, is a guest blogger for the RARE Daily, and has participated in the Global Genes Advocacy Advisors Group.
Michelle Fox, MS, LCGC, Genetic Counselor Consultant, Invitae
For over 30 years, Michelle coordinated the UCLA Genetics Clinic, providing genetic counseling services to both pediatric and adult populations, including the UCLA Predictive Huntington Disease Testing Program, early onset Alzheimer, and genetic neurodegenerative disorders. Her expertise is both on the provision of clinical services and clinical genetic research in the areas of newborn screening, carrier screening, diagnostic testing, and predictive testing.
A focus of Michelle’s work has been on the ethical issues surrounding the provision of genetic services, shared decision making in offering genetic testing, and best practices in communicating genetic information. Educating the public and providers about genetic testing is the mission of Michelle’s professional career. Michelle is currently providing consultation services to organizations, laboratories, and businesses including Invitae.
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.