World Scleroderma Foundation – Executive Director

About the World Scleroderma Foundation

IRCCS San Raffaele Scientific Institute in Milan, Italy, is looking for an Executive Director to the World Scleroderma Foundation. The World Scleroderma Foundation (WSF) is a global charity dedicated to improving understanding, diagnosis, and treatment of systemic sclerosis (scleroderma) – a rare, chronic, and life‑threatening autoimmune disease.

Main missions are promoting research and education. Founded in 2010, WSF brings together patients, clinicians, and researchers worldwide to drive scientific progress and equity of care. The Foundation has built an international reputation for excellence through:

• Funding pioneering research
• Developing global clinical guidelines
• Convening the Systemic Sclerosis World Congress
• Supporting EUSTAR, a WSF working group, dedicated to clinical research using an international database and to promote education primarily to young investigators
• Promoting education of physicians and health professionals

Over the next decade, WSF aims to deliver impact across six strategic priorities:

• Early Diagnosis – training healthcare professionals, funding biomarker research, and raising awareness
• Expanding the Global Network – connecting clinicians, scientists, and advocates worldwide
• Research Leadership – coordinating studies and global congresses, advancing centres of excellence
• Closing the Global Gap in Care – promoting equitable access and training professionals in underserved regions
• Investing in Talent – funding early‑career researchers and building international capacity
• Increasing visibility of WSF and fundraising

The Role

The Executive Director will be responsible for turning the Board’s strategic vision into action, ensuring delivery against clear priorities and timelines, and fostering the search for funding. This 12–24 month role will help embed and test the model, with potential for extension or transition to a permanent structure.

Working closely with a highly engaged and expert Board and Managing Director, the Executive Director will operationalise WSF’s strategy, manage programmes, oversee partnerships and communications.

Key Responsibilities

Strategic Execution

• Translate the Board’s strategic plan into operational objectives and work programmes
• Develop and monitor an annual business plan and performance indicators
• Ensure alignment and progress across WSF’s six strategic pillars
• Promote the funding programme of the WSF to ensure an annual granting system

Governance and Board Engagement

• Serve as the principal liaison between the Board and operational delivery
• Ensure timely follow‑up and implementation of decisions

Partnership and Stakeholder Management

• Build and maintain effective relationships with clinicians, researchers, patient groups, funders, and corporate partners
• Represent WSF at international conferences, meetings, and networks
• Deal with entrepreneurs and other founding bodies to expand the WSF funding programme
• Organise charity events and partnerships with pharmaceutical companies; redesign and execute a fundraising strategy, including donations, individual giving, philanthropic foundations, and corporate partnerships, while cultivating relationships with donors and funding institutions

Operations and Delivery

• Manage day‑to‑day operations, coordinating contractors, partners, and volunteers
• Ensure policies are in place to avoid conflicts of interest or competing priorities, and promote transparency

Communications and Advocacy

• Champion WSF’s role in advancing equity and innovation in scleroderma care

Candidate Profile

This is a highly hands‑on role with a specific remit and clear deliverables. It is ideally suited to a motivated self‑starter who thrives in a dynamic, evolving environment and is confident working independently while engaging effectively with a senior and expert Board.

The successful candidate will demonstrate:

• Strong emotional intelligence (EQ) and the ability to build trust‑based, long‑standing relationships across scientific, clinical, and patient communities
• Creativity and strategic insight, with the ability to design and execute a focused delivery plan aligned to the Foundation’s priorities
• A collaborative and inclusive approach, working closely with the Board, Finance Manager, and Managing Director
• A track record of forming strategic alliances and partnerships that advance mission‑driven goals
• A delivery‑focused mindset, with the discipline to manage complex projects and the agility to adapt as the organisation evolves
• A role for someone who combines strategic acumen with practical execution and is deeply motivated by making a tangible difference in the lives of people affected by scleroderma

Person Specification

Essential

• Proven experience in senior management or executive leadership, ideally within a global health, research, or non‑profit organisation
• Strong track record in operational delivery, managing programmes, budgets, and partnerships
• Excellent skills in strategic planning, governance support, and stakeholder engagement
• Demonstrated ability to manage upwards to an expert Board and engage diplomatically with senior stakeholders
• Financial acumen and ability to ensure transparency and accountability
• Excellent written and verbal communication skills in English
• Knowledge of the scleroderma area and patients’ unmet needs; willingness to travel regularly mostly across Europe and other countries

Desirable

• Knowledge about patients’ unmet needs and experience in medical research, rare diseases, or healthcare advocacy
• Understanding of European and global health systems
• Multilingual capability: fluency in English is essential; proficiency in French and/or German would be a strong asset
• Experience working with scientific or patient‑led organisations

Contract and Remuneration

• Remuneration: EUR 50,000 – 70,000 annually, commensurate with experience
• Contract type: Consultancy agreement (independent contractor)
• Duration: 12 months, full time, renewable subject to performance
• Structure: Invoicing with VAT; no employment benefits or social security obligations
• Location: Milan as the basic headquarters, with the possibility of remote working arrangements

Physical presence in Milan will be required periodically during the initial phase. A transition toward predominantly remote work may be implemented thereafter.

At San Raffaele Scientific Institute, we are committed to ensuring that equal employment opportunities are provided and based on merit without regard to age, religion, sex, disability, medical condition, sexual orientation, cultural and social backgrounds, gender identity or expression, national or ethnic origin, or any other legally recognized status entitled to protection under applicable laws.