Role type
LeadershipExecutive Director / Alliance Lead
Now hiring
Executive Director / Alliance Lead
Mito Discovery Alliance is seeking a mission-driven leader to build and guide a patient-led mitochondrial disease organization through its next stage: community trust, research participation, partnerships, fundraising, program operations, and transparent patient participation.
Location
Remote-firstUnited States preferred
Stage
Early buildHands-on operating role
Focus
Patients + researchTrust, programs, partners, funding
The opportunity
Lead a patient-centered organization as it grows.
Mito Discovery Alliance exists to help people living with mitochondrial disease participate in research with clarity, consent, transparency, and respect. The right leader will be both strategic and practical: comfortable listening deeply to patients and families, coordinating with scientific and clinical partners, building repeatable operations, and communicating the mission with care.
This role is ideal for someone who can turn an ambitious patient-led vision into a credible organization: programs people trust, dashboards people understand, partnerships that are ethically structured, and community systems that can grow without losing their center.
What you will lead
Core responsibilities
Mission and strategy
Translate the Alliance mission into priorities, operating plans, milestones, budgets, and a practical roadmap for growth.
Patient and caregiver trust
Build authentic relationships with mitochondrial disease families, advisors, advocates, clinicians, and community partners.
Programs and operations
Run disease-program enrollment, research opportunities, consent-centered participation, communications, and member support.
Research participation
Coordinate registry programs, Mito Map summary integration, public dashboards, participant metrics, and ethical data-use processes.
Partnerships and fundraising
Develop relationships with funders, sponsors, researchers, biotechs, foundations, health systems, and patient organizations.
Governance and accountability
Help establish policies, advisory structures, reporting rhythms, compliance habits, and transparent decision-making practices.
Who we are looking for
A builder who can hold both urgency and trust.
Experience leading a nonprofit, startup, patient advocacy group, research program, foundation initiative, community organization, or mission-driven operation.
Strong judgment around patient trust, health data, research ethics, privacy, consent, and sensitive communication.
Ability to work with patients, caregivers, clinicians, researchers, industry partners, funders, and technical teams.
Clear written and verbal communication, including the ability to explain complex research and participation concepts plainly.
Comfort operating in an early-stage environment where priorities evolve and the leader is expected to both design systems and do the work.
Fundraising, partnership development, grant writing, program management, rare disease, registry, clinical research, or health technology experience is valuable.
Success looks like
What the first year can build toward.
Trusted community presence
Patients and families understand what the Alliance is, what it is not, and why participation is designed around consent and transparency.
Operational rhythm
Programs, applications, member support, partner conversations, advisory input, and public updates move through repeatable systems.
Research-ready programs
Disease communities have clearer participation metrics, research priorities, and ethically structured opportunities.
Sustainable partnerships
The Alliance has credible funding and partnership conversations underway without compromising patient trust.
Working style
This is not a ceremonial role.
The Alliance needs a leader who can write, listen, organize, ask good questions, follow up, recruit help, make decisions, and keep the mission coherent as the work grows. The role will involve strategy, operations, community engagement, fundraising, partner development, and hands-on execution.
We especially welcome candidates with lived experience in rare disease, caregiving, disability, patient advocacy, or serious health challenges, though lived experience is not required.
Apply