Director Clinical and Research Initiatives, National Tay-Sachs & Allied Diseases Association (NTSAD)
Location: NTSAD is based in Boston MA, but this position could be remote
Description of NTSAD: National Tay-Sachs & Allied Diseases Association (NTSAD), a family-focused patient advocacy organization, supports individuals and families affected by rare neurodegenerative genetic diseases. NTSAD’s mission is to “lead the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.” This is a unique time in NTSAD’s history as we have just completed a new five-year strategic plan outlining plans for growth as clinical trials begin for the first time ever for our diseases.
Position Overview: NTSAD is looking to hire a highly motivated and passionate individual to be our Director of Clinical and Research Initiatives to engage with key stakeholders regarding the discovery and development of treatments and technologies to impact patients affected by Tay-Sachs, Canavan, GM1 gangliosidosis and Sandhoff diseases. The individual hired will engage with academic researchers, clinicians, pharma and biotech companies, other patient groups, families and regulatory authorities to ensure each group is aligned regarding research advancements and activities impacting drug development and earlier diagnosis. This will be the first research director hired for the organization and as such, presents a unique opportunity to continue to grow NTSAD’s role in supporting and driving research, diagnostic and clinical activities to impact patients. The successful candidate will have outstanding relationship-building and communication skills, strong knowledge of drug discovery and drug development, and a passion to make a difference in rare diseases.
Position Responsibilities: This role is multifaceted and will involve engaging in arrange of activities to support the mission of NTSAD. Key responsibilities are outlined below:
Further develop and manage research and diagnosis programs
- Implement updated research strategy and initiatives identified through task forces in research, clinical development, newborn screening and early symptomatic diagnosis.
- Reinvent, implement and manage grant program(s) to provide funding mechanisms to support research efforts at university labs, research institutions and biotech companies.
- Work with community and relevant experts to advocate for and advance newborn screening for NTSAD diseases.
- Leader earlier symptomatic diagnosis initiative through raising awareness, physician education, and improving genetic testing.
- Collaborate with NTSAD’s research and clinical partners to define our disease community’s registry strategy, integrate the registry into overall research agenda, and maximize its value in the drug development
Engage with Stakeholders regarding development of potential treatments, technologies and diagnosis programs
- Working closely with the Executive Director, the Research Director will collaborate with medical research and pharma to develop, maintain, and cultivate relationships with key opinion leaders.
- Provide access to accurate information on core diseases and clinical research tools to companies considering clinical programs.
- Convene patient community and key stakeholders to build knowledge and insight into diseases and clinical development that will be used for clinical planning and execution.
- Update structure, role and manage Science Advisory Committee and Corporate Advisory Council.
- Engage with regulatory authorities to provide input regarding regulatory considerations.
Monitoring research and clinical landscape
- Track relevant scientific literature and advancements.
- Organize research / science conferences to focused on specific research areas/needs including the research session at the Annual Family Conference.
Patient and family engagement in partnership with Family Services Director
- As a scientific expert, engage with patients and staff to provide advice and information regarding scientific and research developments impacting programs in preclinical and clinical development.
- Help develop resources that families can use to understand research advancements that could impact their specific situations.
- Communicate research updates to families and other constituencies; engage the patient and family community to continue to understand NTSAD’s research priorities.
- Support Family Services Director and Coordinator in educating patient community about clinical trials
- Update research section content on web site to be informative for all audiences.
- Master’s degree or higher in a life sciences discipline preferred; BS/BA degree
- Experience in rare genetic diseases preferred.
- Relevant experience in drug discovery and/or drug development, ideally in an industry or non-profit setting; other relevant experience in an academic environment
- Familiarity and ease in conversing with scientists and clinicians conducting medical
- Proven track record of building relationships and establishing and advancing collaborations across and within the non-profit, for-profit, and academic
- Experience engaging with families affected by rare diseases to communicate scientific and clinical updates.
- Strong project management and general organizational
- Ability to work independently and effectively in a remote
- Excellent attention to detail, strong written and verbal communication
- Experience managing research funding and allocating grants