Organisational Governance and Accountability
Rare Disease Watch is part of Honnao Ltd, a company registered in England and Wales. It is committed to improving access to reliable rare disease information, supporting meaningful patient participation and encouraging responsible collaboration between patients, families, carers, researchers, healthcare professionals, patient organisations and industry.
This Governance Framework explains how Rare Disease Watch is directed, managed and held accountable. It establishes the principles governing leadership, editorial independence, patient involvement, partnerships, information management and organisational conduct.
The framework is supported by individual policies and operating procedures, which are linked throughout this document.
Rare Disease Watch aims to make information about rare diseases more accessible, support informed participation and encourage constructive relationships between people affected by rare diseases and the organisations working in this field.
Its activities include publishing educational resources, facilitating appropriate connections, supporting community involvement, maintaining information about relevant organisations and encouraging discussion about research, healthcare and policy.
The organisation does not provide individual medical diagnoses or replace professional medical advice.
Its activities are guided by accuracy, independence, transparency, inclusion and respect for the people and communities it serves.
Rare Disease Watch operates as part of a UK-registered limited company and is subject to applicable company law, the operating company's articles of association and relevant regulatory obligations.
Ultimate responsibility for corporate governance, legal compliance, financial oversight and strategic direction rests with the operating company's appointed director or directors.
Rare Disease Watch is not a separately registered charity. Membership fees, commercial payments, sponsorship and other financial contributions must be represented accurately and must not be described as charitable donations unless legally appropriate.
The organisation may establish advisory groups, committees and operational teams to support its activities. These bodies operate within the authority assigned to them and do not replace the statutory responsibilities of the company's director or directors.
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Rare Disease Watch distinguishes between statutory governance, executive management and independent advice.
Company Director or Directors
The appointed director or directors of the operating company retain ultimate responsibility for corporate governance, legal compliance, financial oversight and strategic direction.
Responsibilities include oversight of significant organisational decisions, major financial commitments, material partnerships, governance arrangements and matters involving substantial legal or reputational risk.
Chief Executive Officer
The CEO is responsible for day-to-day leadership, implementation of organisational strategy, operational management and coordination of activities within delegated authority.
The CEO reports to the company's director or directors on significant organisational developments, risks and decisions requiring approval.
Chief Commercial Officer
The CCO is responsible for commercial development, partnership opportunities, revenue-generating activities and related responsibilities within delegated authority.
Commercial responsibilities do not confer editorial control or unrestricted access to confidential member information.
Advisory Board
The Advisory Board provides professional expertise, independent perspectives and strategic recommendations.
It is a consultative body and does not exercise the statutory powers of the company's director or directors.
Delegation of Authority
Decisions must be made by individuals with appropriate authority. Delegation of operational responsibility does not remove the statutory duties of the company's directors.
No employee, volunteer, adviser or representative may commit the organisation to contractual, financial or legal obligations without appropriate authorisation.
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Rare Disease Watch may appoint Advisory Board members with relevant experience in healthcare, rare diseases, research, governance, business development, fundraising, patient advocacy, communications and other areas relevant to its objectives.
Members may advise on strategy, organisational development, sustainability, international relationships, partnerships and opportunities for community engagement.
Appointments are subject to assessment and approval by an appropriately authorised representative of the organisation.
An annual financial contribution may form part of the conditions of Advisory Board membership. Any such arrangement must be communicated transparently and documented separately.
A contribution does not purchase influence over editorial decisions, access to confidential patient information, statutory governance authority or preferential treatment.
Advisory Board members must disclose relevant conflicts of interest and comply with the organisation's conduct and confidentiality requirements.
The full arrangements are described in the Advisory Board Terms of Reference.
Rare Disease Watch is committed to providing accurate, evidence-informed and accessible information.
Editorial decisions must be based on relevance, evidence, accuracy and public interest rather than commercial relationships or external pressure.
Scientific and medical content should distinguish established evidence from emerging findings, interpretation and uncertainty.
Contributors must disclose relevant financial, professional or other interests that could affect the perceived independence of their work.
Sponsored content must be clearly identified. Sponsors and commercial partners must not determine the conclusions of independent editorial publications.
Where errors are identified, appropriate corrections, updates or other editorial action should be taken.
Rare Disease Watch will maintain editorial procedures appropriate to the nature and potential impact of published material.
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Rare Disease Watch recognises the value of lived experience in understanding rare diseases and improving the relevance of research, healthcare discussions and organisational decisions.
Participation should be voluntary, informed and respectful.
Individuals should understand the purpose of an activity, how their contributions may be used and whether compensation or reimbursement is available.
Participation must not be presented as guaranteeing payment, research enrolment, treatment access or other benefits.
The organisation aims to provide opportunities for involvement while recognising that patient communities are diverse and that no individual can represent every person affected by a condition.
Reasonable consideration should be given to accessibility, communication preferences and barriers that may prevent participation.
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Rare Disease Watch may enable registered members to make selected profile information discoverable to approved partners.
Participation in discovery must be optional and based on an affirmative choice.
Members who have not opted into discovery must not be included in partner-search results.
Approved partners may only access information permitted under the relevant membership arrangements and applicable data protection requirements.
Personal contact details must not be disclosed through partner searches without an appropriate lawful basis and authorisation.
Introductions should be facilitated through the Rare Disease Watch platform, allowing members to decide whether they wish to accept contact before their details are shared.
Access may be restricted or withdrawn where an organisation misuses the service or breaches applicable conditions.
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Rare Disease Watch may collaborate with pharmaceutical companies, biotechnology organisations, research institutions, healthcare providers, patient organisations, charities and other relevant partners.
Partnerships must be consistent with the organisation's objectives and ethical standards.
Commercial relationships must not compromise editorial independence, member confidentiality or the integrity of patient involvement.
Financial arrangements, sponsorship and material conflicts of interest must be disclosed where appropriate.
Partners must not be permitted to influence independent editorial conclusions, obtain inappropriate access to personal information or imply endorsement of products or treatments without express authorisation.
Significant partnerships require approval by an appropriately authorised person.
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Volunteers, authors, advisers and other contributors support Rare Disease Watch through defined activities and responsibilities.
All individuals acting on behalf of the organisation are expected to behave professionally, respect confidentiality, disclose relevant conflicts and work within their authorised responsibilities.
Volunteers should receive appropriate information about their role, expected activities, supervision and the procedures for raising concerns.
Volunteers must not represent themselves as authorised to make commitments on behalf of the organisation unless permission has been granted.
Contributor arrangements should address the use of submitted material, editorial responsibilities, confidentiality and relevant intellectual property rights.
Participation as a volunteer does not automatically create an employment relationship or entitlement to payment.
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Rare Disease Watch must process personal information lawfully, fairly, transparently and securely.
The organisation must comply with applicable data protection legislation, including the UK General Data Protection Regulation and Data Protection Act 2018 where relevant.
Access to personal data must be limited to those with a legitimate and authorised need.
Information concerning health or other special category personal data requires additional safeguards and an appropriate legal basis for processing.
The organisation must maintain appropriate arrangements for data security, retention, deletion, individual rights, incident reporting and international transfers where relevant.
Members must be informed about how their information is used, including any profile discovery, introductions and research-related activities.
Personal information must not be sold or disclosed to external organisations in ways inconsistent with the applicable privacy information and legal requirements.
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Rare Disease Watch aims to provide a respectful environment for members, employees, volunteers, contributors, advisers and partners.
Discrimination, harassment, intimidation, exploitation and inappropriate use of personal information are not acceptable.
The organisation will maintain appropriate arrangements for reporting concerns and responding to potential safeguarding issues.
Where activities involve children, adults at risk or individuals in vulnerable circumstances, additional safeguards may be necessary.
Complaints should be assessed fairly and proportionately, with appropriate attention to confidentiality, conflicts of interest and the seriousness of the matter.
Complaints involving leadership must be handled through arrangements that avoid unmanaged conflicts wherever possible.
Significant issues should be escalated to the company's director or directors, with independent advice obtained where appropriate.
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Rare Disease Watch may maintain a directory of organisations providing services, information, advocacy or support relevant to rare diseases.
Directory listings should meet defined inclusion and accuracy requirements.
Inclusion in the directory does not automatically constitute endorsement, clinical validation or a guarantee of service quality.
Organisations are responsible for providing accurate information and obtaining appropriate permission to use submitted logos, descriptions and other materials.
Rare Disease Watch may amend, suspend or remove listings that are inaccurate, misleading, inappropriate or inconsistent with its standards.
The organisation will maintain procedures for assessing submissions, managing updates and responding to concerns about listed organisations.
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Detailed administration procedures are maintained separately in the restricted Directory Management Guide.
The operating company's director or directors retain responsibility for appropriate financial oversight, accounting arrangements and compliance with relevant financial and tax obligations.
Rare Disease Watch may generate revenue through memberships, partnerships, sponsorship, services, Advisory Board contributions and other lawful activities.
Financial commitments must be authorised appropriately and recorded accurately.
The organisation should identify and manage risks affecting its financial sustainability, contractual obligations and ability to continue its activities.
Commercial arrangements should be consistent with the organisation's purpose and must not compromise its editorial independence or ethical standards.
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Responsibility for maintaining this framework rests with the operating company's director or directors.
The framework should be reconsidered when significant changes occur in the organisation's structure, activities, regulatory obligations or risk profile.
Amendments require approval by the company's appropriately authorised director or directors.
Operational procedures, including brand standards, editorial workflows, volunteer administration, directory management and data access arrangements, are maintained within the restricted Internal Documents area.
These procedures must remain consistent with this Governance Framework.
The following documents provide further information about Rare Disease Watch's governance arrangements, organisational responsibilities and operating principles.
Organisational Governance
Editorial and Contributor Standards
Partnerships and Participation
Information, Safety and Accountability
Operational documents, including the Brand Guidelines, Operating Guidelines, Directory Management Guide, Editorial Workflow and Data Protection & Access Procedures, are maintained separately for authorised personnel.
