Volunteer Advocacy & Partnerships Lead
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
**Volunteer Advocacy & Partnerships Lead: Rare Disease Equity (2-3 positions)**
**About the role**
We're a new advocacy initiative working to improve diagnosis, care and access for rare diseases that disproportionately affect underrepresented communities. We're looking for 2-3 volunteers to help build our advocacy, funding and evidence base from the ground up, as part of a close-knit founding team.
**Key responsibilities**
- **Advocacy:** Develop and deliver campaigns and policy engagement to raise awareness and influence decision-makers
- **Fundraising and revenue generation:** Identify and secure grants, sponsorships and industry partnerships, with transparent, multi-funder models that protect our independence
- **Evidence generation:** Work with clinicians, researchers and patient groups to collect and communicate data on prevalence, diagnosis delays and outcomes
- **Partnerships:** Build relationships with patient organizations, community leaders, clinical centers and industry
- **Representation:** Represent the initiative at relevant conferences and events
**What we're looking for**
- Experience in advocacy, fundraising, partnerships, public affairs or health policy
- Strong communication and relationship-building skills
- Understanding of health inequalities and community engagement
- Self-motivated, collaborative and comfortable working independently
**Desirable**
- Knowledge of the rare disease, pharma or NHS/EU health landscape
- Grant-writing or sponsorship experience
- Lived experience of rare disease, or membership of an affected community
**Commitment:** 20 hours per week for an initial 6-12 month term, with occasional travel to events.
**Location:** In-office at [location] is preferred to build team rapport. Hybrid arrangements are negotiable.
**Expenses:** All reasonable expenses incurred in carrying out the role, including travel, accommodation, meals and other associated costs, will be covered.
**What you'll gain:** Meaningful impact on health equity, a growing network across clinical, patient and industry sectors, a leadership role in a start-up initiative, and references and credit for your contribution.
*We welcome applicants from all backgrounds, especially those from underrepresented communities.*
Registered Charity 