Organisational Listings, Information Accuracy and Directory Governance
Rare Disease Watch maintains a directory to help patients, carers, researchers, healthcare professionals and other interested individuals identify organisations working across the rare disease community.
The directory may include patient organisations, charities, research institutions, healthcare-related organisations and other relevant services.
Finding reliable information about rare diseases can be difficult, particularly when organisations operate across different countries, healthcare systems and areas of expertise.
Our directory is intended to make relevant organisations easier to find while providing clear information about their activities and the limits of any checks undertaken by Rare Disease Watch.
This policy explains how organisations may apply for inclusion, how information is assessed, what verification means and how listings are maintained.
It forms part of the Rare Disease Watch Governance Framework.
The purpose of the directory is to provide an accessible source of information about organisations relevant to rare diseases.
The directory aims to:
Directory inclusion is intended to support informed discovery.
It does not replace individual assessment of whether an organisation or service is appropriate for a person's circumstances.
This policy applies to organisations seeking inclusion in the Rare Disease Watch directory and to those responsible for reviewing, approving and maintaining listings.
It covers:
The policy applies to directory listings regardless of whether an organisation has another membership or partnership relationship with Rare Disease Watch.
The directory may include organisations with activities relevant to rare diseases.
Examples include:
Patient Organisations and Support Groups
Charities, associations, foundations and other groups providing information, advocacy, peer support or services to people affected by rare diseases.
Research Institutions and Academic Organisations
Universities, research centres and institutions undertaking relevant scientific, medical or health research.
Healthcare and Professional Organisations
Relevant professional associations, specialist networks and organisations providing healthcare-related information or services.
Research Networks and Collaborative Initiatives
Groups supporting research collaboration, registries, scientific communication or other relevant activities.
Public and Non-Profit Organisations
Government bodies, public health organisations and non-profit services working in areas relevant to rare diseases.
Commercial Organisations
Relevant commercial organisations may be considered where their inclusion is appropriate to the purpose of the directory and their commercial status is clearly identified.
Eligibility does not guarantee acceptance.
Rare Disease Watch may limit or decline listings that fall outside the intended scope of the directory.
Organisations seeking a directory listing may be required to register with Rare Disease Watch before submitting information for review.
Registration and directory publication are separate processes.
Creating an organisational account does not automatically result in a public listing.
The person submitting information must have appropriate authority to act on behalf of the organisation or otherwise demonstrate a legitimate basis for the submission.
Rare Disease Watch may request additional information to establish the organisation's identity, activities or eligibility.
Organisations are responsible for ensuring that information submitted through their accounts is accurate and current.
Related document:
Membership & Introduction Policy
The information requested may vary according to the organisation's activities and the type of listing.
It may include:
Organisations should provide factual descriptions of their activities.
Claims about clinical effectiveness, treatment outcomes, professional accreditation or regulatory status must be supported by appropriate evidence.
Rare Disease Watch may request clarification or additional documentation before approving a listing.
Rare Disease Watch aims to apply proportionate checks before publishing organisational listings.
The extent of verification may vary according to the organisation's type, the information provided and the potential risks associated with its activities.
Checks may include:
Additional scrutiny may be appropriate for organisations offering clinical services, treatments, diagnostic testing or other activities with significant implications for patient safety.
Verification is limited to the checks actually performed.
It does not constitute a comprehensive audit, inspection, accreditation or ongoing guarantee of an organisation's activities.
A listing that has been reviewed or verified indicates only that Rare Disease Watch has undertaken the relevant checks associated with that status.
Verification must not be represented as evidence that an organisation's services are clinically effective, safe, professionally accredited or suitable for every individual.
Rare Disease Watch does not independently validate every statement made by listed organisations.
Where verification categories or indicators are used, their meaning should be explained clearly.
The organisation should not use terminology such as accredited, clinically approved or certified unless the relevant status has been established through an appropriate process.
A listing must not be described as verified merely because the organisation has registered or paid a fee.
Inclusion in the directory does not automatically mean that Rare Disease Watch endorses, recommends or guarantees the organisation.
The directory provides information to help users identify potentially relevant services and resources.
Rare Disease Watch does not guarantee:
Users should make their own enquiries and seek appropriate professional advice where relevant.
Organisations offering healthcare, diagnosis, treatment or clinical services may require additional consideration.
Where relevant, Rare Disease Watch may assess publicly available information about professional registration, regulatory status or institutional credentials.
The nature of healthcare regulation differs between countries.
A service operating lawfully in one jurisdiction may not be authorised or appropriate in another.
Directory inclusion must not be interpreted as confirmation that a healthcare service is suitable for a particular patient.
Claims concerning treatments, medical devices, diagnostic tests or clinical outcomes must not be misleading.
Rare Disease Watch may decline or remove listings where significant safety or regulatory concerns arise.
The directory may include organisations undertaking research relevant to rare diseases.
Inclusion does not constitute endorsement of a particular study or guarantee that the organisation has obtained every approval required for its research activities.
Where a listing refers to clinical trials or research participation, information should distinguish research opportunities from established healthcare services.
Clinical trials and other studies remain subject to the responsibilities of their sponsors, investigators and relevant institutions.
Individuals considering research participation should receive appropriate information from the responsible research organisation.
Listed organisations are responsible for maintaining accurate information.
They should notify Rare Disease Watch when material changes occur, including:
Rare Disease Watch may request updated information or supporting evidence.
Where an organisation does not respond to a reasonable request for clarification, its listing may be restricted or removed.
Directory decisions must be made according to the organisation's relevance, eligibility and applicable verification requirements.
Commercial partnerships, sponsorship or membership payments must not determine whether an organisation is represented as independently verified.
Rare Disease Watch may maintain separate commercial arrangements with some listed organisations.
Such arrangements do not automatically provide editorial influence or preferential verification status.
Where paid promotional placement or enhanced visibility is offered, its commercial nature should be clearly identified.
The distinction between directory inclusion and commercial partnership must remain clear.
Related documents:
Individuals reviewing or approving directory listings must disclose relevant conflicts of interest.
These may include employment, financial relationships, consultancy, organisational affiliations or other interests involving an applicant.
A disclosed conflict should be assessed and managed appropriately.
Possible measures include independent review, reassignment of the decision or other safeguards.
An individual should not make a directory approval decision where an unmanaged conflict could compromise the integrity of the process.
Related document:
Listings should be written in clear, factual and accessible language.
Descriptions should explain what an organisation does without unnecessary promotional claims.
Rare Disease Watch may edit submitted text for:
Material changes affecting the meaning of an organisation's description should be checked where appropriate.
Rare Disease Watch may decline to publish statements that cannot be adequately substantiated.
Organisations submitting logos, photographs or other visual material must have the necessary rights to provide them for publication.
Submission should include permission for Rare Disease Watch to display the material in connection with the relevant listing.
Rare Disease Watch may resize or format images for technical and accessibility purposes within the scope of the permission granted.
An organisation's logo must not be used in a way that misleadingly implies sponsorship, endorsement or a formal partnership.
Where an organisation withdraws a listing, requests concerning continued use of its branding should be considered in accordance with applicable rights and obligations.
Directory listings may contain organisational and individual contact information.
Information about identifiable individuals must be processed in accordance with applicable data protection requirements.
Organisations should provide contact details intended for public use wherever possible.
Personal email addresses, telephone numbers or other identifiable information should not be published without an appropriate lawful basis and any necessary notices or permissions.
Information obtained through directory registration must not automatically be made public.
Directory information must not be used to circumvent member privacy settings or introduction procedures.
Related documents:
An organisation may be a Rare Disease Watch community member without having an approved directory listing.
Similarly, directory inclusion does not automatically provide access to restricted membership services.
Membership, directory participation, commercial partnership and Advisory Board membership are distinct arrangements.
Each may have separate eligibility, approval and contractual requirements.
Organisations must not imply that directory inclusion confers rights associated with another category of participation.
Rare Disease Watch recognises that individuals may use the directory when seeking information about complex medical conditions.
Listings must not exploit patients' circumstances or make unsupported claims about treatment outcomes.
Particular care is required where organisations advertise experimental interventions, unproven treatments or services that may expose individuals to significant financial or medical risk.
Rare Disease Watch may decline or remove listings where credible concerns arise about misleading claims, patient exploitation or inappropriate conduct.
The directory is not a substitute for medical advice.
Users should consult appropriately qualified healthcare professionals when making decisions about diagnosis or treatment.
Rare Disease Watch may review directory listings periodically or when relevant information becomes available.
A review may be prompted by:
The frequency and extent of review may vary according to the type of listing and available resources.
Rare Disease Watch does not guarantee continuous monitoring of every listed organisation.
Where a listing has not been recently reviewed, users should not be given the impression that all information has been freshly verified.
Organisations may request corrections to their listings.
Rare Disease Watch may also make corrections where information is found to be inaccurate or outdated.
Material changes may require further verification.
Where an error creates a significant risk of misleading users, Rare Disease Watch may temporarily restrict or remove the listing while the matter is assessed.
Minor editorial changes may be made without a formal correction notice.
Individuals and organisations may raise concerns about directory information, eligibility, verification or the conduct of a listed organisation.
Concerns should be assessed fairly and proportionately.
Where a complaint concerns an external organisation, Rare Disease Watch may request clarification or supporting information.
The organisation is not automatically responsible for resolving disputes between directory users and independent third parties.
Nevertheless, credible concerns affecting listing accuracy, safety or eligibility may justify further review.
General concerns may be sent to:
Related document:
Rare Disease Watch may suspend, restrict or remove a listing where there are reasonable grounds to believe that continued publication would be inappropriate.
Reasons may include:
Where appropriate, the listed organisation may be given an opportunity to respond or correct the information.
Immediate temporary removal may be necessary where there is a credible and significant risk to users.
Decisions should be documented in accordance with internal directory management procedures.
An organisation whose listing has been declined, suspended or removed may request reconsideration.
The request should explain the grounds for reconsideration and provide any relevant supporting information.
Where practical, reconsideration should involve an authorised person who was not solely responsible for the original decision.
Rare Disease Watch may maintain restrictions while a significant safety, legal or privacy concern remains unresolved.
A request for reconsideration does not guarantee reinstatement.
Directory administration may involve authorised staff, volunteers and other contributors.
Individuals assisting with directory management must follow relevant procedures concerning verification, accuracy, confidentiality and conflicts of interest.
Volunteers must not independently approve high-risk listings or make binding commitments unless expressly authorised.
The executive leadership is responsible for managing directory activities within its delegated authority.
Material legal, financial, safeguarding or governance concerns may require escalation to the operating company's director or directors.
Detailed operational procedures should be maintained in the restricted Directory Management Guide.
This policy forms part of the Rare Disease Watch governance arrangements.
It may be reviewed when directory services, membership arrangements, regulatory requirements or organisational responsibilities change.
Material amendments require approval by an appropriately authorised representative of the organisation.
The policy should be read alongside applicable directory submission terms and other relevant governance documents.
Organisational Governance
Membership and Partnerships
Editorial and Contributor Standards
Information and Conduct
