• Family Friendly, Community Research Updates

Remote; preferably based in greater Boston area to facilitate regular in-person meetings

The position is compensated with a base salary that will be commensurate with the candidate's experience.

About Project 8p Foundation:

Project 8p Foundation is a nonprofit biotech organization established in late 2018. We are researching 8p disorders to find treatment options and give meaningful answers to those affected and their families. We are patient-led and open science. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment. Project 8p’s organizational philosophy is premised on stakeholders that are patient-centered for collaboration, transparency, and resource sharing to fulfill the mission. Project 8p is committed to translating research into medicines and aspires to scale learnings to other complex neurological chromosome diseases.

The Role:

We are seeking a highly motivated candidate with experience in leading multi-faceted research programs in academia or industry to accelerate modalities (drug repurposing, gene therapies, etc). This individual will have the unique opportunity to devise high-level scientific strategies, plan and implement specific projects, and communicate results to all 8p stakeholders including families.

Responsibilities:

• Research Program Innovation and Cultivation:
  • Continue to cultivate and grow our research programs and annually work withleadership to update the Research Roadmap.
  • Cultivate new program areas across modalities such as drug repurposing, genetherapies, and preclinical modeling.
  • Evaluate and refine scientific priorities based on emerging data and communityneeds.
• Engagement and Partnership Development:
  • Internally: Regularly meet with the Executive Director to provide updates andinsights into research initiatives. Collaborate with program project directors;present research developments to the Board; facilitate and design plan formonthly research roundtables; host interactive family community updates
  • Externally: Scientific Advisory Excellence: Seek out science advisors, biotechvisionaries, nonprofit champions, and creative minds. Collaborate with theExecutive Director and board to facilitate strategic partnerships across academia,biotech, and advocacy.
    • Lead the charge in research-oriented meetings and dynamic webinarsrelevant to the field that drive innovation, collaboration, and transformative change in the field. Foster strategic partnerships within the rare diseasearena, travel to patient advocacy events, speaker programs and conferences. Design initiatives that inspire families to actively participatein research.
    • Present research updates at conferences, community town halls, andboard meetings.
• Scientific Communication & Storytelling:
  • Transform scientific breakthroughs into captivating narratives. Synthesizeresearch in a way that engages, motivates and excites both internal and externalaudiences.
  • Lead the planning, agenda development, and content coordination for regularMSAB (Medical & Scientific Advisory Board) meetings, ensuring alignment withresearch milestones and strategic priorities
• Strategic Leadership:
  • Grant Making and Evaluation: Identifying and soliciting new research projectsand investigators, design of experiments and milestones, oversee existing andnew program effectiveness and evaluate sponsored research projects. Establishand manage the Research Funding Announcement (RFA) process and researchnetwork of Principal Investigators (PIs).
  • Exhibit analytical prowess and strong project management skills. This includesbudgeting and successful implementation of projects.
• Identification of appropriate grant fundraising opportunities in the research andscience based fields. Assist with grant writing as appropriate.
• Clinical Trial Readiness and Repurposed Trials:
  • Demonstrated expertise in clinical trial readiness, including protocoldevelopment, patient recruitment, and regulatory compliance.
• Innovative Data Capture:
  • Proficiency in implementing innovative approaches, including video datacapturing methods, to enhance data collection and analysis for research projects,ensuring a comprehensive understanding of the disease’s nuances.

Professional Qualifications:

• Demonstrated ability to analyze complex scientific information, with quantitative and
  qualitative analysis skills
• Strong written, oral, and interpersonal communication skills, including ability to effectively
  communicate scientific information to lay audiences
• Strong organizational abilities including effective planning, prioritization, delegation,
  program development and task facilitation
• Good follow-through and the ability to work independently and with limited oversight and
  direction
• Familiarity with budget preparation, analysis, and strategic decision-making
• Creativity and personal dynamism
• Mission driven individual who personally advocates for disabilities
• Commercial orientation and success in business development. Experience inidentifying and capitalizing on growth opportunities

Education:

PhD or equivalent in the biological, biomedical, neurosciences, pharmacology or health sciences

Work Experience:

• Highly motivated and interest in rare disease research and cellular biology of modelingdisease
• Prior experience with preclinical and clinical studies, drug development orpharmaceutical/biotech industry
• A plus if experience working or interacting with a research-oriented or patient advocacynon profit organization
• Transparent and high integrity leadership in a collaborative setting with advisory board,BOD, and team
• Willing to travel 30-40%

Application Requirements:

All candidates should submit their resume along with other applicable requirements to Lauren@project8p.org.

• Please explain what is compelling to work on a complex rare disease and whyyou are interested in a part-time position at a new rare disease foundation
• Please provide a brief description of your research interests and short-term andlong-term goals
• Resume/CV
• Writing sample(s)
  • Publication list, if applicable
  • 1 long-form of scientific writing for scientific or medical community
  • 1 short-form writing or presentation for general public, patients, caregivers

Why Join Us?

You’ll be part of a small, nimble, mission-driven team at the heart of a growing rare disease ecosystem. This is an opportunity to have real impact, build cross-sector partnerships, and push the field forward—while staying connected to the families who drive our work. We recognize that no candidate will meet every requirement. If you feel drawn to our mission and meet most of the criteria, we strongly encourage you to apply.

Project 8p Foundation is a registered 501(c)(3) charitable organization with EIN 83-2545342. All contributions are deemed tax-deductible

• Project 8p Foundation, 787 Seventh Avenue – 31st Floor, New York, NY 10019