Rare Disease Watch is committed to providing a respectful, inclusive and responsible environment for people affected by rare diseases and those working across research, healthcare, advocacy and related fields.
Our community brings together individuals with different experiences, professional backgrounds and personal circumstances. Some members may be managing complex health conditions, caring responsibilities or difficult experiences within healthcare systems.
We recognise that safeguarding involves more than responding to serious incidents. It also requires clear expectations about behaviour, appropriate professional boundaries, respect for personal information and accessible ways to raise concerns.
This policy explains the standards of conduct expected from people participating in Rare Disease Watch activities and the procedures for identifying, reporting, recording and responding to safeguarding concerns.
It forms part of the Rare Disease Watch Governance Framework.
This policy applies to individuals and organisations participating in activities conducted by or on behalf of Rare Disease Watch, including:
It applies to relevant activities conducted through the website, membership platform, online meetings, events, correspondence, collaborations and other authorised channels.
Where activities are conducted by independent organisations, those organisations retain their own safeguarding and legal responsibilities.
Rare Disease Watch's responsibilities depend on its actual role in the activity.
Rare Disease Watch approaches safeguarding according to the following principles.
Respect and Dignity
Everyone should be treated with dignity, regardless of diagnosis, disability, age, nationality, ethnicity, religion, sex, gender, sexual orientation, professional background or other personal characteristics.
Individual Autonomy
Adults should be supported to make their own decisions wherever they have the capacity to do so.
Prevention
Potential risks should be considered before activities take place, particularly where they involve sensitive information, personal experiences or direct contact between individuals.
Proportionate Action
Responses to concerns should reflect the nature and seriousness of the situation.
Confidentiality
Sensitive information should be shared only where necessary and lawful.
Accountability
Concerns should be taken seriously, recorded appropriately and referred to individuals with suitable authority.
Protection from Retaliation
Individuals should be able to raise concerns in good faith without being subjected to harassment or inappropriate retaliation.
Rare Disease Watch membership is restricted to individuals aged 18 and over.
Some adults may experience circumstances that increase their risk of abuse, exploitation or harm.
These circumstances may relate to disability, illness, dependence on others, communication difficulties, social isolation or other factors.
Having a rare disease does not automatically mean that an individual lacks capacity or is unable to make decisions.
Safeguarding responses should respect individual autonomy while recognising circumstances in which additional protection may be necessary.
The legal definition of an adult at risk, and the responsibilities of organisations supporting them, differ between jurisdictions.
Rare Disease Watch will consider the applicable legal and safeguarding requirements when responding to concerns.
Rare Disease Watch does not permit individuals under the age of 18 to register as community members.
Parents, carers and other adults may access information concerning rare diseases affecting children.
Activities involving information about identifiable children require particular care.
Members must not publish unnecessary personal, medical or identifying information about children.
If Rare Disease Watch organises an activity involving children, appropriate safeguarding arrangements must be established before the activity takes place.
These may include parental permissions, suitable supervision, risk assessment and any legally required checks.
The minimum membership age does not remove the organisation's responsibility to respond appropriately if a concern involving a child comes to its attention.
Everyone participating in Rare Disease Watch activities is expected to behave respectfully, responsibly and professionally.
Participants should:
Disagreement is permitted.
Criticism of research, healthcare systems, organisational decisions or professional opinions is not, by itself, a breach of this policy.
The concern is how individuals behave towards others, rather than whether their views are shared.
Rare Disease Watch does not permit behaviour involving:
Conduct may breach this policy whether it occurs publicly, privately or through digital communications connected with Rare Disease Watch activities.
Rare Disease Watch brings together patients, carers, researchers, clinicians and commercial professionals.
These relationships may involve differences in expertise, authority, resources or access to information.
Participants must respect appropriate boundaries.
Professional qualifications or organisational positions must not be used to pressure others into participation, disclosure or agreement.
Members should not be encouraged to share personal medical information beyond what is necessary for an agreed activity.
Volunteers and employees must not establish unauthorised professional, financial or commercial arrangements on behalf of Rare Disease Watch.
Individuals must not imply that they are acting in an official capacity unless authorised to do so.
Rare Disease Watch provides information, educational resources and opportunities for appropriate connection.
It does not provide individual diagnosis or treatment through its community platform.
Members, volunteers and contributors must not provide personalised medical advice on behalf of Rare Disease Watch.
This applies even where an individual has professional healthcare qualifications.
Healthcare professionals participating in an independent professional capacity remain responsible for their own professional and regulatory obligations.
Personal experiences of treatments or healthcare services should not be presented as evidence that the same approach will be appropriate for others.
Where someone requests individual medical guidance, they should be directed towards an appropriately qualified healthcare professional.
Urgent medical concerns require appropriate emergency or urgent healthcare services.
Rare Disease Watch may facilitate communication through online services, meetings, events and platform-mediated introductions.
Participants must not use these services to harass, threaten, exploit or repeatedly contact others against their wishes.
Members must not attempt to circumvent profile discovery settings or introduction controls.
Private contact details must not be obtained or shared without appropriate authority.
Individuals should be cautious about disclosing sensitive information during online discussions.
Rare Disease Watch may restrict participation or access where there are credible concerns about misuse of its services.
Profile discovery is genuinely opt-in.
Joining Rare Disease Watch does not automatically make a member discoverable.
Members who choose to participate in discovery retain the right to accept or decline individual introduction requests.
Declining an introduction must not result in harassment, repeated pressure or loss of ordinary community membership.
An accepted introduction does not authorise unrelated contact, marketing or further disclosure of personal information.
Researchers and commercial organisations must respect the purpose and limitations of each introduction.
Related document:
Membership & Introduction Policy
Rare Disease Watch may facilitate opportunities for patients and carers to contribute to research, advisory activities, consultations and other projects.
Participation must be voluntary and based on appropriate information about the activity.
Individuals must not be pressured to disclose health information, endorse products or support predetermined conclusions.
Where compensation is agreed, payment must not depend on providing favourable opinions.
The organisation commissioning the activity is responsible for agreed compensation and reimbursable expenses unless Rare Disease Watch has expressly accepted that responsibility in writing.
Commercial organisations must not use Rare Disease Watch to exploit patients' circumstances or obtain unauthorised access to personal information.
Related documents:
Rare Disease Watch recognises that information about rare diseases can be particularly identifying.
In small patient populations, combinations of details such as diagnosis, age, location and treatment history may identify someone even where their name is not disclosed.
Participants must respect the confidentiality of information shared through authorised activities.
Employees, volunteers and other authorised personnel must not:
Confidentiality must not be used to prevent necessary safeguarding disclosures or lawful reporting of serious concerns.
Related document:
Data Protection & Privacy Policy
Patients and carers may choose to share personal experiences through articles, interviews, events or other activities.
Their participation does not automatically authorise publication of identifiable information.
Where personal stories, photographs or recordings are to be published, the intended use should be explained and appropriate permission obtained.
Individuals should understand whether their contributions may be edited, attributed, recorded or shared with third parties.
Where appropriate, they should have an opportunity to review how their experiences are represented before publication.
Additional safeguards may be necessary where information concerns children, adults at risk or particularly sensitive medical circumstances.
Volunteers and contributors must follow the conduct and safeguarding expectations applicable to their activities.
They should receive appropriate guidance on:
Volunteers must not independently investigate safeguarding allegations or promise absolute confidentiality.
They must not make unauthorised commitments on behalf of Rare Disease Watch.
Concerns must be reported promptly to the Designated Safeguarding Contact.
Related documents:
Rare Disease Watch may organise online or in-person events, webinars, discussions and collaborative meetings.
The nature of each activity should determine the safeguards required.
Considerations may include:
Participants should be informed where meetings are recorded.
Recording must not be used in ways inconsistent with the permissions and information provided to participants.
Organisers should consider whether additional support is appropriate for discussions involving potentially distressing subjects.
A safeguarding concern may arise where there is reason to believe that someone is experiencing, or is at risk of experiencing, abuse, exploitation, neglect or other serious harm.
Examples may include:
Not every disagreement or complaint is a safeguarding matter.
Concerns should be assessed according to their circumstances and potential seriousness.
Where someone discloses a safeguarding concern, the person receiving the information should respond calmly and respectfully.
They should:
Individuals should not promise absolute confidentiality.
They should avoid asking unnecessary or leading questions that could interfere with subsequent enquiries.
The safety and wishes of the person concerned should be considered, subject to applicable legal and safeguarding obligations.
The Designated Safeguarding Contact for Rare Disease Watch is:
Dr Shara Cohen
Founder, Rare Disease Watch
Email: support@rarediseasewatch.com
Dr Cohen is responsible for overseeing the handling of safeguarding concerns reported to Rare Disease Watch.
Her responsibilities include:
These responsibilities do not require Dr Cohen to undertake specialist investigations that should properly be conducted by statutory authorities or other qualified professionals.
Where appropriate, external safeguarding or legal advice may be obtained.
Safeguarding concerns arising through Rare Disease Watch activities should be reported promptly.
Where someone is in immediate danger or requires urgent assistance, the appropriate emergency services in the country where the person is located should be contacted.
Rare Disease Watch is not an emergency response service.
Concerns should be reported to:
Dr Shara Cohen
Designated Safeguarding Contact
Email: support@rarediseasewatch.com
Employees, volunteers and other authorised representatives must report safeguarding concerns on the same day they become aware of them.
Members and external participants are encouraged to report concerns as soon as reasonably possible.
Reports should contain relevant factual information, including:
Reports should avoid unnecessary speculation or disclosure of unrelated personal information.
Email is not an emergency reporting mechanism and may not be monitored continuously.
Where a concern involves Dr Cohen, the report should not be referred to her for sole assessment.
The matter should be raised with an appropriate executive officer who is not implicated in the concern, using the organisation's published leadership contact arrangements.
That officer should arrange independent consideration and, where necessary, seek external safeguarding or legal advice.
Where the matter involves a serious risk, individuals may report directly to the relevant statutory authority or emergency service.
The fact that Dr Cohen is the Designated Safeguarding Contact does not prevent concerns about her conduct from being raised or independently considered.
Safeguarding reports should be reviewed by the Designated Safeguarding Contact or another appropriately authorised person where an alternative arrangement is necessary.
The initial assessment should consider:
The response should be proportionate to the nature and seriousness of the concern.
Where a report indicates a significant risk of harm, safeguarding considerations take priority over routine administrative processes.
Rare Disease Watch will not attempt to replace the functions of police, healthcare services, statutory safeguarding authorities or other relevant agencies.
Rare Disease Watch will maintain a confidential safeguarding incident record.
The purpose of this record is to ensure that safeguarding concerns are documented accurately, assessed appropriately and followed through.
Each recorded incident should include, where relevant:
Records must distinguish between factual observations, information reported by others and conclusions reached following assessment.
Unnecessary personal or medical information should not be recorded.
The incident record is an internal governance and safeguarding document. It is not publicly accessible.
Safeguarding incident records must be stored securely.
Access should be restricted to the Designated Safeguarding Contact and other appropriately authorised individuals who require access for legitimate safeguarding, legal or governance purposes.
Where an incident concerns the Designated Safeguarding Contact, access and oversight must be managed independently.
Records should not be stored in unrestricted volunteer files, public membership profiles or shared documents accessible to unauthorised individuals.
The organisation must establish appropriate retention and deletion arrangements, taking account of applicable law, the seriousness of the concern and the potential need for future safeguarding or legal review.
Records should be reviewed periodically to ensure that they remain necessary, accurate and appropriately protected.
Any disclosure to an external organisation or authority must have an appropriate lawful basis.
Related document:
Data Protection & Privacy Policy
Safeguarding information should be handled with particular care.
Information should be shared only with individuals or authorities who have an appropriate need and lawful basis to receive it.
The identity of someone raising a concern should not be disclosed unnecessarily.
Absolute confidentiality cannot be guaranteed where disclosure is necessary to protect someone from serious harm or comply with legal obligations.
The wishes and safety of the person concerned should be considered when deciding what information to share.
Safeguarding records must be managed in accordance with the organisation's data protection responsibilities.
Not every complaint is a safeguarding concern.
Complaints may concern service quality, communication, membership decisions, professional conduct or other organisational matters.
Safeguarding concerns involve potential abuse, exploitation, neglect or serious harm.
A complaint may also reveal a safeguarding issue.
Where that occurs, the safeguarding aspects should be addressed through the appropriate escalation arrangements rather than treated solely as an ordinary complaint.
Related document:
Rare Disease Watch may take proportionate action where this policy is breached.
Depending on the circumstances, action may include:
Decisions should take account of the seriousness of the conduct, available evidence, applicable contractual obligations and the need to protect individuals.
Immediate temporary restrictions may be appropriate where there is a credible risk of harm.
Where feasible and appropriate, the person concerned should have an opportunity to respond before a final decision is made.
Individuals must not be subjected to harassment, intimidation or inappropriate disadvantage because they raise a safeguarding concern or complaint in good faith.
This protection also applies to individuals who provide relevant information during an assessment.
A report made in good faith should not be treated as misconduct merely because a concern cannot ultimately be substantiated.
Deliberately false or malicious allegations may themselves constitute misconduct, but a lack of supporting evidence does not establish malicious intent.
Dr Shara Cohen is responsible for safeguarding oversight, incident recording, escalation and ensuring that significant concerns receive appropriate consideration.
The executive officers are responsible for implementing safeguarding expectations within day-to-day operations, ensuring that employees and volunteers understand reporting procedures and supporting appropriate action.
They must escalate safeguarding concerns to the Designated Safeguarding Contact promptly.
Where the founder is implicated in a concern, an executive officer who is not implicated must arrange independent assessment or appropriate external referral.
Employees and volunteers are responsible for following this policy, respecting professional boundaries and reporting safeguarding concerns on the same day they become aware of them.
They must not conduct unauthorised investigations.
Members and external participants are expected to follow the Code of Conduct and raise serious concerns through appropriate channels.
Partners and external organisations remain responsible for their own safeguarding obligations and must cooperate appropriately where concerns arise in jointly organised activities.
Individuals with safeguarding responsibilities should receive guidance appropriate to their roles.
Training needs may vary according to whether an individual manages members, moderates discussions, organises events or handles sensitive information.
Volunteers should receive safeguarding and reporting guidance during onboarding.
This must include:
The Volunteer Onboarding Pack and relevant internal procedures should reflect these requirements.
Rare Disease Watch should review training needs as its activities develop.
Rare Disease Watch operates internationally, while its operating company is based in the United Kingdom.
Safeguarding laws, reporting duties and statutory services differ between countries.
Where a concern involves someone outside the United Kingdom, the appropriate response may depend on the individual's location, the nature of the concern and applicable local law.
Rare Disease Watch should seek appropriate specialist or legal advice where necessary.
The organisation must not assume that UK safeguarding procedures can be applied without modification in every jurisdiction.
The Designated Safeguarding Contact will oversee the safeguarding incident record and identify matters requiring organisational attention.
Safeguarding information may be reviewed to identify:
Where safeguarding matters are reported for wider governance purposes, personal information should be limited to what is necessary.
This policy should be reviewed when relevant legislation, organisational activities, safeguarding risks or governance arrangements change.
Material amendments require approval by an appropriately authorised director or directors.
Organisational Governance
Membership and Participation
Editorial and Partnerships
Privacy and Information
