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Partners4Patients Foundation

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

Alliance for Pulmonary Hypertension logoCurrent 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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UK LSD Collaborative logoCurrent 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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ESPERANS: Paediatric Sleep Apnea Survey logoCurrent 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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Completed

Finished projects

European SMA Newborn Screening Alliance logoCompleted 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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Hepatitis-Free Cologne logoCompleted 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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EuMGA Summit 2024 logoCompleted 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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LGMD Community Advisory Board logoCompleted 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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Founding Bronchiektasen e.V. logoCompleted project

Founding 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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