3 Volunteer advocates volunteer roles

**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.*