About the World Scleroderma FoundationIRCCS 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 ****, 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 researchDeveloping global clinical guidelinesConvening the Systemic Sclerosis World CongressSupporting EUSTAR, a WSF working group, dedicated to clinical research using an international database and to promote education primarily to young investigatorsPromoting education of physicians and health professionalsOver the next decade, WSF aims to deliver impact across six strategic priorities:Early Diagnosis – training healthcare professionals, funding biomarker research, and raising awarenessExpanding the Global Network – connecting clinicians, scientists, and advocates worldwideResearch Leadership – coordinating studies and global congresses, advancing centres of excellenceClosing the Global Gap in Care – promoting equitable access and training professionals in underserved regionsInvesting in Talent – funding early?career researchers and building international capacityIncreasing visibility of WSF and fundraisingThe RoleThe 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 ***** 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 ResponsibilitiesStrategic ExecutionTranslate the Board's strategic plan into operational objectives and work programmesDevelop and monitor an annual business plan and performance indicatorsEnsure alignment and progress across WSF's six strategic pillarsPromote the funding programme of the WSF to ensure an annual granting systemGovernance and Board EngagementServe as the principal liaison between the Board and operational deliveryEnsure timely follow?up and implementation of decisionsPartnership and Stakeholder ManagementBuild and maintain effective relationships with clinicians, researchers, patient groups, funders, and corporate partnersRepresent WSF at international conferences, meetings, and networksDeal with entrepreneurs and other founding bodies to expand the WSF funding programmeOrganise 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 institutionsOperations and DeliveryManage day?to?day operations, coordinating contractors, partners, and volunteersEnsure policies are in place to avoid conflicts of interest or competing priorities, and promote transparencyCommunications and AdvocacyChampion WSF's role in advancing equity and innovation in scleroderma careCandidate ProfileThis 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 communitiesCreativity and strategic insight, with the ability to design and execute a focused delivery plan aligned to the Foundation's prioritiesA collaborative and inclusive approach, working closely with the Board, Finance Manager, and Managing DirectorA track record of forming strategic alliances and partnerships that advance mission?driven goalsA delivery?focused mindset,



with the discipline to manage complex projects and the agility to adapt as the organisation evolvesA 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 sclerodermaPerson SpecificationEssentialProven experience in senior management or executive leadership, ideally within a global health, research, or non?profit organisationStrong track record in operational delivery, managing programmes, budgets, and partnershipsExcellent skills in strategic planning, governance support, and stakeholder engagementDemonstrated ability to manage upwards to an expert Board and engage diplomatically with senior stakeholdersFinancial acumen and ability to ensure transparency and accountabilityExcellent written and verbal communication skills in EnglishKnowledge of the scleroderma area and patients' unmet needs; willingness to travel regularly mostly across Europe and other countriesDesirableKnowledge about patients' unmet needs and experience in medical research, rare diseases, or healthcare advocacyUnderstanding of European and global health systemsMultilingual capability: fluency in English is essential; proficiency in French and/or German would be a strong assetExperience working with scientific or patient?led organisationsContract and RemunerationRemuneration: EUR 50,********,000 annually, commensurate with experienceContract type: Consultancy agreement (independent contractor)Duration: 12 months, tempo pieno, renewable subject to performanceStructure: Invoicing with VAT; no employment benefits or social security obligationsLocation: Milan as the basic headquarters, with the possibility of remote working arrangementsPhysical 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.
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📌 World Scleroderma Foundation – Executive Director - €50.000 - €70.000 A Year (Bardi)
🏢 World Scleroderma Foundation
📍 Bardi