Commercial Relationships, Editorial Independence and Ethical Collaboration
Rare Disease Watch works to improve understanding of rare diseases, make reliable information more accessible and encourage responsible collaboration between patients, carers, researchers, healthcare professionals, patient organisations and industry.
Partnerships can help organisations share knowledge, develop resources, support research engagement and reach communities that might otherwise be difficult to connect with.
Commercial relationships can also create conflicts of interest, particularly where organisations have financial interests in treatments, research outcomes, healthcare services or access to patient communities.
This policy explains how Rare Disease Watch approaches partnerships, sponsorship and other external relationships. It establishes the principles governing independence, transparency, patient protection, commercial activity and organisational accountability.
It forms part of the Rare Disease Watch Governance Framework.
The purpose of this policy is to ensure that partnerships and sponsorship arrangements support Rare Disease Watch's objectives without compromising its independence, integrity or responsibilities to the people and organisations using its platform.
Rare Disease Watch recognises that collaboration between patient communities, researchers, healthcare professionals and commercial organisations can be valuable.
Such collaboration must be conducted responsibly, with clear expectations about the purpose of the relationship, the responsibilities of each party and any financial or other interests involved.
Partnerships should provide an identifiable benefit to the organisation's activities, its community or the wider rare disease field.
This policy applies to external relationships involving Rare Disease Watch, including:
Different types of relationships may require different agreements and approval arrangements.
This policy establishes the principles that apply across those activities.
Rare Disease Watch assesses potential partnerships according to their relevance, purpose and compatibility with its organisational responsibilities.
Partnerships should:
Rare Disease Watch may decline a proposed relationship where its purpose, activities or conditions are inconsistent with these principles.
Rare Disease Watch may work with different categories of organisations.
Patient Organisations and Charities
These relationships may involve information sharing, awareness activities, community engagement, educational resources and collaboration on issues affecting people living with rare diseases.
Research and Academic Institutions
Partnerships may support research communication, responsible participant engagement, educational initiatives and discussion of scientific developments.
Healthcare Organisations
Relationships may involve healthcare education, professional information, service awareness and relevant community activities.
Pharmaceutical and Biotechnology Companies
Commercial partnerships may support appropriate educational initiatives, research engagement, professional collaboration and access to authorised platform services.
Such relationships are subject to additional scrutiny where they involve patient participation, sensitive information, medical claims or potential conflicts of interest.
Other Commercial and Professional Organisations
Rare Disease Watch may collaborate with businesses providing relevant services, expertise, technology, communications or other support.
Participation in a partnership does not automatically constitute endorsement of an organisation's products, services or commercial activities.
Proposed partnerships should be assessed before the organisation makes a binding commitment.
The assessment may consider:
The level of assessment should be proportionate to the nature and potential impact of the arrangement.
Partnerships involving significant financial commitments, access to sensitive information, substantial reputational risk or other material obligations require approval by an appropriately authorised person.
The CEO and CCO may develop and manage partnerships within their delegated responsibilities.
Significant matters requiring corporate approval must be referred to the operating company's director or directors.
Rare Disease Watch may receive income from partnerships, sponsorship, memberships and other lawful commercial activities.
Receiving financial support does not give a partner authority over the organisation's governance, independent editorial decisions or internal management.
Commercial arrangements must not require Rare Disease Watch to publish misleading information, suppress relevant evidence or present unsupported medical claims.
Partners must not be permitted to influence independent reporting through financial pressure or contractual conditions that compromise editorial integrity.
Rare Disease Watch retains responsibility for determining whether material published under its name meets its standards.
Related documents:
Rare Disease Watch may accept sponsorship for publications, educational resources, webinars, events or other activities.
Sponsorship arrangements must be appropriately documented.
Where content has received financial or material support, the nature of that support should be disclosed where relevant.
A sponsor may be acknowledged, but acknowledgement must not imply that Rare Disease Watch endorses the sponsor's products, services or treatments.
Sponsors must not control the conclusions of independent editorial publications.
Where content is commissioned, sponsored or produced collaboratively, its commercial nature must be clearly distinguishable from independent editorial reporting.
All material remains subject to applicable editorial, scientific, legal and ethical requirements.
Rare Disease Watch recognises the role of pharmaceutical and biotechnology companies in rare disease research, diagnostics and treatment development.
Engagement with industry may provide opportunities for education, scientific discussion, research collaboration and patient involvement.
These relationships require clear boundaries.
Industry partners must not:
Where a proposed activity involves medicines, medical devices or healthcare products, relevant advertising, promotional and regulatory requirements must be considered.
Requirements may differ between countries.
Rare Disease Watch may decline activities that could create inappropriate promotion or compromise patient protection.
Rare Disease Watch may operate partnership and membership arrangements through which eligible organisations can participate in its activities.
Different arrangements may apply to charities, patient organisations, academic institutions, healthcare organisations and commercial businesses.
Participation may involve access to relevant information, organisational profiles, approved collaboration opportunities or other defined services.
Some partner services may require payment, eligibility assessment or organisational approval.
Payment does not guarantee access to individuals, research participants, confidential information or editorial opportunities.
Partners must comply with the conditions applicable to their membership or service arrangement.
Rare Disease Watch may restrict, suspend or terminate access where an organisation breaches relevant conditions.
Rare Disease Watch may provide approved partners with opportunities to identify potential collaborators through its membership platform.
Member discovery must be based on appropriate eligibility, access controls and individual choice.
Members must be able to decide whether they wish to participate in profile discovery.
Partners may only access information permitted under the applicable service arrangements and data protection requirements.
Personal contact information must not be disclosed through partner searches without appropriate authority and a lawful basis.
Where a partner wishes to contact a member, introductions should be facilitated through the Rare Disease Watch platform.
Members should be able to accept or decline an introduction before their personal contact details are shared.
Commercial participation does not confer ownership of member information or unrestricted access to the community.
Related documents:
Partnership activities involving patients, carers or advocates must respect individual autonomy, informed participation and confidentiality.
Participants should understand:
Participation must not be presented as guaranteeing access to treatment, research enrolment, healthcare services or payment.
Where patients contribute expertise or lived experience to commercial activities, appropriate consideration should be given to compensation, accessibility and the nature of the contribution.
Rare Disease Watch must not represent individual participants as speaking for an entire rare disease community.
Related document:
Patient Involvement & Compensation Principles
Rare Disease Watch may support responsible communication about research opportunities and facilitate appropriate connections between researchers, organisations and interested community members.
The organisation does not automatically act as a research sponsor, clinical trial site or research recruitment organisation.
Its role in any research-related activity must be defined before participation begins.
Research partners remain responsible for obtaining applicable ethical approvals, regulatory permissions and other authorisations required for their activities.
Rare Disease Watch may request evidence of relevant approvals where appropriate.
Research opportunities must be described accurately, including eligibility requirements and the distinction between participation in research and access to clinical care.
The organisation must not guarantee that members will qualify for or be accepted into a study.
Where a proposed activity involves identifiable patient information, additional data protection and ethical safeguards may be required.
Individuals involved in developing, recommending, negotiating or approving partnerships must disclose relevant conflicts of interest.
These may include financial interests, employment, consultancy, advisory positions, personal relationships or involvement with an organisation seeking a partnership.
A conflict does not automatically prevent an individual from contributing to a partnership discussion.
The conflict must be assessed and managed appropriately.
Measures may include disclosure, independent review, withdrawal from a decision or reassignment of responsibilities.
Where a conflict concerns the operating company's statutory director or directors, applicable company law and the company's articles of association take precedence over internal procedures.
Related document:
Members of the Rare Disease Watch Advisory Board may introduce potential partners, identify funding opportunities and provide advice on commercial or organisational development.
Advisory Board membership does not provide authority to approve contracts, commit organisational funds or make binding decisions on behalf of Rare Disease Watch.
An annual financial contribution may form part of the conditions of Advisory Board membership.
Such contributions do not purchase editorial influence, statutory governance authority, preferential access to member information or guaranteed commercial opportunities.
Where an Advisory Board member has an interest in a proposed partnership, that interest must be disclosed and managed.
Related document:
Advisory Board Terms of Reference
Rare Disease Watch may receive financial support through sponsorship, partnership fees, membership arrangements, grants, services or other lawful sources.
Financial arrangements must be recorded accurately and comply with applicable accounting, tax and regulatory requirements.
The organisation must not describe commercial payments as charitable donations where that description would be legally inaccurate.
Funding conditions must be considered before acceptance.
Rare Disease Watch may decline financial support where the attached conditions would compromise its independence, ethical standards or responsibilities to members.
Financial contributions do not automatically confer endorsement, governance rights or influence over independent editorial activities.
Partnerships may involve access to organisational information, commercial discussions or personal data.
All information must be handled in accordance with applicable confidentiality obligations and data protection legislation.
Personal information must not be shared with partners without an appropriate lawful basis and necessary safeguards.
Special category personal data, including health information, requires additional protection.
Partners must not use information obtained through Rare Disease Watch for purposes outside the authorised arrangement.
Where a partnership involves personal data processing, the respective responsibilities of the parties must be established and appropriate agreements put in place where legally required.
International transfers of personal information must comply with applicable data protection requirements.
Related document:
Partners must not use the Rare Disease Watch name, logo or other branding without appropriate authorisation.
Any agreed use must comply with the organisation's brand requirements and the conditions of the relevant partnership.
Partners must not imply that Rare Disease Watch endorses their products, treatments, services or organisational positions unless an express endorsement has been authorised.
Rare Disease Watch may acknowledge partnerships publicly where appropriate.
Joint announcements, press releases and public statements require agreement from the relevant authorised representatives.
Use of a partner's name or logo by Rare Disease Watch must also respect applicable permissions and intellectual property rights.
Rare Disease Watch may maintain a directory of organisations providing relevant information, services, support or advocacy.
Directory inclusion is distinct from a commercial partnership unless expressly stated otherwise.
A directory listing does not automatically constitute endorsement, clinical validation or a guarantee of service quality.
Commercial partners must not receive misleading verification status or preferential claims of trustworthiness solely because they have made a payment.
Where paid visibility or promotional placement is offered, its commercial nature should be clearly identified.
Organisations are responsible for providing accurate information about their activities.
Related document:
Directory Listing & Verification Policy
Partnerships must be conducted professionally and with respect for the individuals and communities involved.
Rare Disease Watch will not knowingly support arrangements involving exploitation, harassment, discrimination or inappropriate use of personal information.
Activities involving children, adults at risk or people in vulnerable circumstances may require additional safeguards.
Where concerns arise about the conduct of a partner or the safety of participants, the organisation may review, restrict or suspend the relevant activity.
Serious safeguarding concerns must be addressed through appropriate reporting and escalation arrangements.
Related documents:
Employees, volunteers and contributors may support partnership development within their agreed responsibilities.
They must not independently enter into contracts, promise financial commitments, guarantee services or make official statements without appropriate authorisation.
Volunteers supporting outreach should receive clear instructions about the purpose and boundaries of their activities.
Partnership contacts and information obtained through Rare Disease Watch must not be used for unauthorised personal or commercial purposes.
Related document:
Material partnership arrangements should be documented in writing.
Depending on the nature of the relationship, an agreement may address:
The level of documentation should be proportionate to the risks and obligations involved.
Only appropriately authorised individuals may approve binding agreements on behalf of the operating company.
Rare Disease Watch may review active partnerships to assess whether they continue to meet organisational objectives and applicable requirements.
A review may consider performance, contractual obligations, financial arrangements, conflicts of interest, participant feedback and emerging risks.
Where concerns arise, the organisation may seek clarification, require corrective action or reconsider the relationship.
Significant concerns should be escalated to the appropriate level of organisational leadership.
Rare Disease Watch may suspend or terminate a partnership where there is a material breach of agreed conditions or where continuation would create unacceptable legal, ethical, safeguarding or reputational risks.
Grounds may include:
Any suspension or termination must be handled in accordance with applicable contractual obligations and legal requirements.
Individuals or organisations may raise concerns about partnership activities, sponsorship arrangements or the conduct of external partners.
Concerns should be assessed fairly and proportionately.
Where a complaint involves an individual responsible for assessing it, alternative arrangements should be considered to avoid an unmanaged conflict.
Serious matters may require escalation to executive leadership or the operating company's director or directors.
Related document:
Responsibility for the overall governance of partnership and sponsorship arrangements rests with the operating company's director or directors.
Executive leadership may develop, negotiate and manage relationships within delegated authority.
The Advisory Board may provide advice and introductions but does not exercise statutory decision-making powers.
Financial, legal and operational commitments must be approved at the appropriate level.
The organisation's internal operating procedures provide further guidance on partnership assessment, approvals and administration.
This policy forms part of the Rare Disease Watch governance arrangements.
It should be reviewed when significant changes occur in organisational activities, commercial services, regulatory obligations or governance arrangements.
Material amendments require approval by the appropriately authorised director or directors.
The policy should be read alongside the organisation's relevant contractual terms, privacy information and supporting governance documents.
Organisational Governance
Editorial and Contributor Standards
Partnerships and Community Participation
Information and Conduct
