Vice President, Genetic Sevices and Education
The Vice President of Genetic Services and Education reports to the Chief Operating Officer and oversees the organization's genetic services, data strategy, and communications related to genetics and clinical trials. The VP serves as a resource for families, companies, clinicians, and researchers in matters related to AS genetics. They play an essential role in directly providing genetic services to families and addressing any questions related to clinical trials. Additionally, this position will serve as a science writer for public-facing content regarding science and clinical trials.
Primary responsibilities include:
Overarching
- Provide genetic services, including direct communication with families and developing tools and resources to educate families on genetics, clinical trials, and other research opportunities (including natural history studies and survey research).
- Serve as a science writer for FAST to create public-friendly science education materials and content, focusing on genetics and AS research, including gene therapy, gene editing, and antisense
- oligonucleotides.
- Serve as a resource for families, companies, clinicians, and researchers related to AS genetics.
- Co-develop patient preference research in AS, including new studies as appropriate.
- In collaboration with the FAST science team, COO, and FAST Australia, serve as the key point of contact with global data efforts, including natural history studies and data consortiums.
Global Angelman Syndrome Registry (GASR)
- Co-lead GASR strategy, including developing communication plans for families and the AS community.
- Generate research questions to use available retrospective data to answer current research questions.
- Analyze data to understand potential correlations and communicate useful data to companies, researchers, clinicians, and families.
- Present on genetics and learnings from registry virtually and in-person at conferences and meetings.
- Participate in manuscript preparation and grant preparations.
- Co-author journal publications and present results at national meetings.
- Prepare and deliver presentations (public and virtual) related to registry data and other projects.
GASR Data Curation
- Perform regular data cleaning, including errors, missing data, and duplicates, as well as for accuracy and completeness.
- Help develop and implement additional curator roles.
- Follow up with users regarding potential duplicates/ errors/ missing data.
- Respond to user questions about the registry.
- Work with outside consultants to run data analysis; prepare public reports and data visuals for the community.
- Contribute to the development of a data strategy, including potential edits of data elements and the development of new data modules.
- Performs related duties & responsibilities as assigned/requested.
Required Education, Experience, Skills and Attributes:
- Master's degree in Genetic Counseling or directly equivalent discipline
- Certification/Licensure: Board-eligible or board-certified as a Genetic Counselor
- 5+ years of prior experience in a nonprofit organization in a genetic counselor role
- Ability to work fluently with scientists, researchers, industry partners, families and caregivers, and the FAST team of parents, professionals, and staff
- Strong administrative, organizational, and detail-oriented skills
- Ability to communicate effectively through both verbal and written communication
- Ability to handle multiple competing assignments and deadlines effectively and efficiently with a calm, professional demeanor
- Absolute adherence to standards of confidentiality, discretion, and ethical conduct
- Ability to work independently with moderate supervision and to work in a collaborative manner within and across organization teams
- Flexible, “can-do” attitude and ability to pivot quickly and seamlessly between projects
- Proficiency in Microsoft Office suite (Word, Excel, PowerPoint)
Preferred Education, Experience, Skills and Attributes:
- Experience in neuroscience-related projects
- Nonprofit experience
Work Authorization/Security Clearance Requirements: Valid Authorization to Work in the
United States.