Our projects

Projects that started with a patient organization.

Every project below was initiated and is led by a patient organization. Our role is named openly on each one.

How a project moves

Initiated by a patient organization
Structured with Partners4Patients Foundation
Role named openly

Participants at a Partners4Patients Foundation networking event

Current

Projects underway

Current project

Alliance for Pulmonary Hypertension

Patients and caregivers affected by pulmonary hypertension often lack easy cross-border access to reliable information, peer support, and shared best practices.

Rare disease · Patient education & empowermentEurope

Partners4Patients Foundation's role: Strategic guidance, operational coordination, funding and project development support
Outcome: Expanded educational programming and a growing cross-border knowledge-sharing platform for patients and caregivers.

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Current project

UK LSD Collaborative

UK patient organisations for lysosomal storage disorders face shared challenges in advocacy, research, and policy that are hard to tackle alone.

Rare disease · Advocacy & researchUnited Kingdom

Partners4Patients Foundation's role: Secretariat: governance, coordination, and project management support
Outcome: A functioning Steering Group and working groups advancing newborn screening, real-world evidence, and sustainable organisation development.

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Current project

ESPERANS: Paediatric Sleep Apnea Survey

Little patient-centred evidence exists on the diagnosis, care journey, and burden of obstructive sleep apnea in children in France.

Paediatric care · Patient-centred evidenceFrance

Partners4Patients Foundation's role: Building and coordinating the stakeholder alliance, fundraising and partner engagement, co-creation and governance support
Outcome: A co-created national survey generating actionable evidence for improved diagnosis, care, and health policy.

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Current project

Hepatitis-Free Cologne

Hepatitis B, C, and D often go undetected until advanced stages, and referral pathways into guideline-based care are not always clear in the Cologne region.

Viral hepatitis · Prevention & early detectionCologne, Germany

Partners4Patients Foundation's role: Coordinating stakeholder engagement, managing project communications, developing patient-centred information and referral resources
Outcome: A practical local network supporting access to specialist care, contributing to the long-term goal of eliminating viral hepatitis.

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Completed

Finished projects

Completed project

European SMA Newborn Screening Alliance

Spinal muscular atrophy is often diagnosed too late for children to benefit fully from timely treatment, because newborn screening is not yet standard everywhere in Europe.

Rare disease · Newborn screeningEurope

Partners4Patients Foundation's role: Secretariat for more than three years: coordination, governance, and operational support
Outcome: Sustained multi-country collaboration advancing the inclusion of SMA in national newborn screening programmes.

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Completed project

EuMGA Summit 2024

Myasthenia gravis patient organisations across Europe had limited shared spaces to align on advocacy priorities and exchange expertise.

Rare disease · Cross-border advocacy eventEurope

Partners4Patients Foundation's role: Operational and organisational partner: legal, financial, logistical, and project management support
Outcome: Strengthened knowledge sharing and a shared vision for MG advocacy across European patient organisations.

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Completed project

LGMD Community Advisory Board

Industry sponsors developing treatments for limb-girdle muscular dystrophy often lack structured access to lived-experience insight on disease burden and trial readiness.

Rare disease · Patient engagement in R&DGlobal

Partners4Patients Foundation's role: Non-profit legal and organisational framework, industry collaboration facilitation, contract and governance management
Outcome: Independent, structured patient input shaping industry research and clinical development programmes.

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Completed project

Founding Support Bronchiektasen e.V.

People living with bronchiectasis, a chronic respiratory disease with limited public attention, had no dedicated organisation to represent and connect them.

Chronic respiratory disease · Organisation foundingGermany

Partners4Patients Foundation's role: Advice on organisational development, stakeholder engagement, and sustainable structures
Outcome: An independent, active patient organisation now advocating for the bronchiectasis community.

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Completed project

Psychological burden in systemic sclerosis

People living with systemic sclerosis may experience substantial psychological distress, yet real-world evidence from non-clinical settings in Germany has been limited.

Systemic sclerosis · Mental health · Real-world evidenceGermany

Partners4Patients Foundation's role: Study implementation partner: Partners4Patients Foundation provided the resources, research expertise, and practical support needed to turn a community-generated idea into a robust study. Its contribution included collaborative online questionnaire development, data collection, and data analysis.

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