Community Membership, Profile Discovery, Introductions and Member Protection
Rare Disease Watch brings together people living with rare diseases, carers, researchers, patient organisations and professionals working across research, healthcare and related fields.
Our community is intended to help members access information, identify relevant organisations and explore opportunities for appropriate collaboration.
We recognise that people join for different reasons. Some are looking for information or support. Others want to share expertise, connect with researchers or contribute to activities that may improve understanding of rare diseases.
Participation must remain voluntary, transparent and respectful of individual privacy.
This policy explains the principles governing membership, profile discovery, introductions, professional and commercial participation, confidentiality and member responsibilities.
It forms part of the Rare Disease Watch Governance Framework.
The purpose of this policy is to establish clear expectations for participation in the Rare Disease Watch community.
It aims to ensure that:
Rare Disease Watch welcomes individuals and organisations with a legitimate interest in rare diseases.
Membership categories may include the following.
Patients
Individuals living with rare diseases who wish to access information, connect with relevant organisations or explore appropriate opportunities for participation.
Carers
Family members, unpaid carers and others supporting individuals affected by rare diseases.
Researchers
Individuals involved in academic, scientific or clinical research relevant to rare diseases.
Charities and Patient Organisations
Non-profit organisations, patient groups and advocacy bodies working with rare disease communities.
Pharmaceutical, Biotechnology and Other Biomedical Professionals
Professionals and organisations working in pharmaceutical development, biotechnology, diagnostics, healthcare technology and related commercial fields.
Additional categories or arrangements may apply to volunteers, Advisory Board members and approved organisational partners.
Membership categories may have different eligibility, approval, access and payment requirements.
Rare Disease Watch provides free community membership for eligible patients, carers, researchers, charities and patient organisations.
Free membership is intended to support access to information and appropriate community participation.
It does not require members to take part in research, advisory work, commercial activities or introductions.
Members may use the services and features available to their membership category, subject to applicable terms and technical availability.
Rare Disease Watch may review eligibility where a membership category has been selected inaccurately.
Pharmaceutical, biotechnology and other commercial biomedical professionals may be required to join through an approved paid membership or partnership arrangement.
Commercial membership is distinct from free community membership.
Payment may provide access to specified professional services, organisational features or permitted collaboration opportunities.
It does not confer unrestricted access to patients, carers or other members.
Commercial membership does not provide:
Applications may be subject to eligibility assessment and approval.
The applicable benefits, fees and conditions should be stated separately in the relevant membership or partnership terms.
Individuals and organisations wishing to join Rare Disease Watch must complete the applicable registration process.
Registration may require information such as:
Additional information may be requested where needed to assess eligibility for particular services or membership categories.
Members are responsible for providing accurate information and keeping relevant details up to date.
Registration information must be handled in accordance with the Privacy Policy.
Rare Disease Watch may provide members with profiles containing information relevant to their interests, experiences or professional activities.
The information requested may differ according to membership category.
Members should understand which information is used for account administration, which may appear on a profile and which may be available through member discovery.
Providing information for membership administration does not automatically mean agreeing to make that information discoverable.
Members should avoid including unnecessary sensitive information in profile fields intended for wider visibility.
Rare Disease Watch may review or restrict profile content that is misleading, inappropriate or inconsistent with its policies.
Rare Disease Watch may offer an optional profile discovery service that helps eligible members identify potential contacts or collaborators.
Participation in discovery must be based on an affirmative choice by the member.
Members who do not opt into discovery should not have their profiles made available through the discovery service merely because they have registered.
Where discovery is enabled, members should be informed about:
Members should be able to withdraw from optional discovery.
Withdrawal should prevent new discovery through the service, subject to the platform's technical implementation and any lawful retention requirements.
Information displayed through member discovery should be limited to what is appropriate for the service and the member's selected permissions.
Depending on membership category and individual preferences, this may include:
Direct contact information should not be exposed through discovery searches without appropriate authority and a lawful basis.
Special category personal data, including identifiable health information, requires additional safeguards.
Members should not be required to disclose a diagnosis or detailed medical history simply to participate in the wider community.
Rare Disease Watch may facilitate introductions between eligible members and approved organisations.
The intended process is based on member choice.
Step 1 — Discovery
An eligible user identifies a potentially relevant member through the permitted discovery service.
Step 2 — Introduction Request
The interested party submits an introduction request through the Rare Disease Watch platform.
Step 3 — Member Notification
The member receives information about the request, including the identity of the requesting party and the stated purpose of the proposed contact.
Step 4 — Member Decision
The member may accept or decline the request.
Step 5 — Introduction
Where the member accepts, Rare Disease Watch may facilitate the introduction and share only the contact information authorised for that purpose.
Declining a request must not affect the member's ordinary community membership.
Rare Disease Watch does not guarantee that an introduction will be accepted or lead to any subsequent activity.
Membership registration, profile discovery and individual introductions are separate activities.
Agreeing to one does not automatically constitute agreement to the others.
Members must retain meaningful control over optional participation.
In particular:
Any consent relied upon for processing personal data must meet the requirements of applicable data protection law.
Once an introduction has been accepted, the individuals or organisations involved may communicate within the scope of the agreed introduction.
They are responsible for conducting those communications respectfully and lawfully.
Contact details obtained through an introduction must not be used for unrelated marketing, recruitment, research or commercial purposes without an appropriate lawful basis and any required permissions.
Members must not share another person's contact details with third parties without appropriate authority.
Rare Disease Watch may restrict access where its services are misused.
Researchers may use approved Rare Disease Watch services to identify potential collaborators or share relevant research opportunities.
An introduction is not equivalent to enrolment in a study.
Researchers remain responsible for applicable ethical approvals, regulatory requirements, participant information, consent and research governance.
Research invitations must accurately describe the nature and purpose of the proposed activity.
Members must not be promised access to treatment or clinical benefits as an inducement to participate.
Where an activity involves collection of personal or health information, the responsible research organisation must establish appropriate data protection arrangements.
Rare Disease Watch may decline to facilitate research-related activities where adequate safeguards are not demonstrated.
Approved pharmaceutical, biotechnology and other commercial partners may be permitted to request introductions through designated platform services.
Commercial access must operate within the conditions of the relevant membership or partnership agreement.
Commercial organisations must not use Rare Disease Watch to obtain unrestricted patient contact lists.
They must not assume that a member's participation in discovery constitutes permission for direct marketing or commercial solicitation.
Where an introduction concerns patient involvement, advisory activities or research engagement, the purpose and commercial nature of the proposed activity should be disclosed.
Related document:
Partnership & Sponsorship Policy
Members may be invited to contribute to advisory meetings, research consultations, workshops, educational activities or other structured projects.
Participation is voluntary.
Where compensation is offered, the terms should be explained before the individual agrees to participate.
The organisation commissioning the activity is responsible for all agreed compensation and reimbursable expenses unless Rare Disease Watch has expressly accepted that responsibility in writing.
The responsible organisation, payment arrangements, eligible expenses and expected timescales should be identified in advance.
Facilitating an introduction does not, by itself, make Rare Disease Watch responsible for payment.
Members must not be required to express favourable opinions or endorse products as a condition of compensation.
Related document:
Patient Involvement & Compensation Principles
Charities, patient organisations, academic institutions and other eligible organisations may participate through the appropriate membership arrangements.
An organisational account should be managed by an individual authorised to represent that organisation.
Organisations are responsible for the accuracy of information submitted through their accounts.
Membership does not automatically establish a formal partnership with Rare Disease Watch.
Nor does it authorise an organisation to use Rare Disease Watch branding, claim endorsement or make commitments on its behalf.
Separate approval may be required for directory listings, partnerships, sponsorships or other organisational activities.
Rare Disease Watch may maintain a directory of organisations and services relevant to rare diseases.
Directory participation is distinct from community membership and member discovery.
An organisation may be required to register before submitting a directory listing.
Registration does not guarantee that a listing will be approved.
Directory entries may be subject to verification, review and ongoing accuracy requirements.
Inclusion in the directory does not automatically constitute endorsement of an organisation's services or activities.
Related document:
Directory Listing & Verification Policy
Rare Disease Watch recognises that membership information may include sensitive personal data.
Information about rare diseases can be particularly identifying because some conditions affect very small populations.
Personal information must be processed for specified, legitimate purposes and protected through appropriate organisational and technical measures.
Access to member information should be limited according to legitimate responsibilities and authorised platform permissions.
Personal information must not be sold or disclosed to commercial organisations as unrestricted contact data.
Where a third-party service provider processes information on behalf of Rare Disease Watch, appropriate safeguards and contractual arrangements must be established where required.
International data transfers must comply with applicable data protection requirements.
Related document:
All members are expected to behave respectfully and responsibly.
Members must not:
Rare Disease Watch may take proportionate action where members breach these requirements.
Related document:
Safeguarding & Code of Conduct
Rare Disease Watch provides information and opportunities for appropriate connection.
It does not provide individual medical diagnosis or treatment through its membership platform.
Members should not interpret another member's experience as medical advice applicable to their own circumstances.
Researchers, clinicians and other professionals remain responsible for complying with their professional obligations.
Rare Disease Watch does not guarantee the quality, suitability or outcomes of services offered by external individuals or organisations.
Members should seek advice from appropriately qualified healthcare professionals concerning individual medical decisions.
Some membership categories or platform services may involve fees.
Where payment is required, the applicable price, billing arrangements, renewal terms and cancellation conditions should be presented before purchase.
Paid membership does not guarantee access to individual members or participation in particular activities.
Refunds and other payment matters are governed by the applicable contractual terms and relevant consumer or commercial law.
Rare Disease Watch may amend membership offerings or prices in accordance with the applicable terms and legal requirements.
Members may request changes to their account information, discovery preferences or membership arrangements.
Members may also request account closure, subject to applicable legal and administrative requirements.
Closing an account does not necessarily require immediate deletion of information that must lawfully be retained.
Withdrawal from profile discovery should be treated separately from cancellation of membership.
Members who have already accepted an introduction may need to communicate directly with the other party about ending further contact.
Rare Disease Watch cannot guarantee deletion of information lawfully obtained and independently retained by another organisation, but that organisation remains responsible for complying with its own data protection obligations.
Rare Disease Watch may restrict, suspend or terminate membership where there is a material breach of applicable rules or where continued access creates unacceptable legal, security, safeguarding or organisational risks.
Grounds may include:
Where appropriate, the organisation may seek clarification or provide an opportunity to respond before taking action.
Immediate restrictions may be necessary where there is a serious safety, privacy or security concern.
Any action must be consistent with applicable contractual and legal obligations.
Members may raise concerns about membership administration, introductions, conduct, privacy or the use of the platform.
Concerns should be considered fairly and proportionately.
Complaints involving another member or external organisation may require clarification of Rare Disease Watch's responsibilities and the responsibilities of the parties involved.
Privacy concerns should be handled in accordance with applicable data protection procedures.
Safeguarding concerns should be escalated through the relevant reporting arrangements.
General enquiries and concerns may be sent to:
Related document:
Rare Disease Watch's executive leadership is responsible for administering membership services within its delegated authority.
This includes overseeing eligibility, access arrangements, introduction procedures and compliance with organisational policies.
Material legal, financial, governance or safeguarding matters may require escalation to the operating company's director or directors.
The Advisory Board may provide advice on membership development and community engagement but does not exercise automatic authority over individual membership decisions.
This policy forms part of the Rare Disease Watch governance arrangements.
It may be reviewed when membership categories, platform features, commercial services, data protection requirements or organisational responsibilities change.
Material amendments require approval by an appropriately authorised representative of the organisation.
Where changes materially affect members' rights or the processing of their information, appropriate notice and any legally required choices should be provided.
Organisational Governance
Partnerships and Patient Participation
Privacy and Community Conduct
