Rare Disease Watch aims to provide accurate information, responsible community services and professional interactions with the people and organisations involved in its work.
We recognise that concerns may arise about our publications, membership services, communications, organisational decisions or the conduct of individuals acting on our behalf.
People should be able to raise those concerns without unnecessary difficulty or fear of being treated unfairly.
This policy explains how complaints and concerns can be submitted, how they will be considered and what individuals can expect from the process.
Our intention is to address concerns fairly, learn from mistakes and maintain confidence in the way Rare Disease Watch operates.
This policy forms part of the Rare Disease Watch Governance Framework.
This policy applies to complaints and concerns relating to Rare Disease Watch activities, services and representatives.
It may be used by:
Complaints may relate to:
Employment grievances, contractual disputes and matters requiring specialist statutory procedures may need to be handled through separate arrangements.
This policy does not replace legal rights or prevent individuals from approaching an appropriate regulator or authority.
Rare Disease Watch will seek to handle complaints according to the following principles.
Accessibility
People should be able to raise concerns through a straightforward process.
Fairness
Complaints should be considered impartially, taking account of the available information and the perspectives of those involved.
Proportionality
The response should reflect the nature and seriousness of the concern.
Confidentiality
Information should be shared only where necessary and lawful.
Timeliness
Complaints should be acknowledged and progressed without unnecessary delay.
Accountability
Decisions should be explained where appropriate, and significant issues should be escalated to someone with suitable authority.
Learning
Complaints should inform improvements to services, policies and organisational practices.
A complaint is an expression of dissatisfaction about an action, decision, service or omission by Rare Disease Watch where a response or resolution is sought.
A concern may be raised without the individual necessarily wishing to make a formal complaint.
Examples include:
Not every enquiry, suggestion or disagreement requires a formal investigation.
Where appropriate, a matter may be resolved through clarification, correction or an informal response.
An individual may nevertheless request formal consideration where the matter remains unresolved.
Some concerns require additional safeguards or a different procedure.
Concerns involving abuse, exploitation, neglect, serious harassment or risks to an individual's safety must be handled under the Safeguarding & Code of Conduct Policy.
The Designated Safeguarding Contact is:
Dr Shara Cohen, Founder, Rare Disease Watch
Safeguarding concerns should be reported promptly. Employees and volunteers must escalate them on the same day they become aware of them.
Where someone is in immediate danger, the appropriate emergency services should be contacted.
Rare Disease Watch is not an emergency response service.
Complaints involving personal information, privacy rights or potential data breaches must be assessed under the relevant data protection procedures.
Individuals retain their statutory rights and may contact the Information Commissioner's Office where applicable.
Related document:
Data Protection & Privacy Policy
Allegations involving fraud, serious conflicts of interest, abuse of authority or other significant misconduct may require independent assessment, legal advice or referral to an appropriate authority.
Rare Disease Watch does not provide emergency healthcare or individual medical treatment.
Individuals requiring urgent medical assistance should contact the appropriate healthcare or emergency services.
Complaints and concerns may be submitted by email to:
Please use the subject line:
Complaint or Concern – Rare Disease Watch
To help us understand the matter, it is useful to include:
You do not need to use a particular form or legal terminology.
We may request further information where necessary to understand or assess the concern.
Please avoid sending unnecessary sensitive medical information.
Rare Disease Watch recognises that some individuals may experience communication, accessibility or health-related difficulties when raising concerns.
We will consider reasonable requests for adjustments to the complaints process.
These may include:
A person may ask someone to assist them with a complaint.
Where personal information is involved, Rare Disease Watch may need to confirm that the representative has appropriate authority to act.
Some concerns can be resolved without a formal investigation.
Examples include correcting a website error, clarifying a membership procedure or addressing a misunderstanding.
Where appropriate, Rare Disease Watch may propose an informal response.
This may involve:
Informal resolution should not be used to avoid proper consideration of serious misconduct, safeguarding concerns or significant privacy issues.
If an individual remains dissatisfied, they may request formal review.
Rare Disease Watch aims to acknowledge formal complaints within five working days of receipt.
The acknowledgement should, where appropriate:
Working days generally exclude weekends and public holidays in England.
Where the matter requires urgent safeguarding or security action, it must not wait for the ordinary acknowledgement period.
Following receipt, the complaint will be assessed to determine:
The assessment should be proportionate to the seriousness and complexity of the concern.
Where a complaint falls outside Rare Disease Watch's responsibilities, we may explain the limitation and, where appropriate, identify a more suitable route.
Where formal consideration is appropriate, the complaint should be assigned to an authorised person who can assess the matter fairly.
The review may include:
The person complained about should not be solely responsible for determining the outcome.
Where allegations concern an individual, that person should ordinarily have a reasonable opportunity to respond, subject to safeguarding, confidentiality and other applicable requirements.
A formal complaint review is not automatically a disciplinary or legal investigation.
Rare Disease Watch aims to provide an initial substantive response or outcome within 20 working days of acknowledging a formal complaint.
Some matters may require longer because of their complexity, the availability of relevant information or the need for external advice.
Where additional time is required, we should explain the reason for the delay and provide an updated timeframe.
These targets are organisational service standards.
They do not override statutory deadlines, including those applicable to data protection rights requests.
Urgent safeguarding or serious safety concerns must be addressed according to their risk rather than the ordinary complaints timetable.
Depending on the circumstances, a complaint may result in:
A complaint may be upheld in full, upheld in part or not upheld.
Where appropriate, the outcome should explain the reasons for the decision.
Rare Disease Watch may be unable to disclose confidential information about actions taken in relation to another individual.
An individual who remains dissatisfied with the outcome of a formal complaint may request reconsideration.
A request should normally be submitted within 20 working days of receiving the outcome.
It should explain why reconsideration is requested.
Relevant grounds may include:
Reconsideration is not necessarily a complete repetition of the original review.
Where practicable, it should be conducted by someone who was not solely responsible for the original decision.
Rare Disease Watch aims to acknowledge reconsideration requests within five working days and provide a response within 20 working days, unless additional time is reasonably required.
Complaints concerning executive officers should not be assigned solely to the person whose conduct or decision is being challenged.
Where appropriate, the matter may be referred to the founder or another authorised person who is not implicated.
The seriousness of the allegation should determine whether independent advice or external consideration is necessary.
The Advisory Board may provide advice within its terms of reference, but it does not automatically have authority to investigate complaints, overturn executive decisions or exercise statutory governance powers.
Any involvement of Advisory Board members must respect confidentiality and conflicts of interest.
Where a complaint concerns Dr Shara Cohen, it must not be referred to her for sole determination.
The concern should be raised with an executive officer who is not implicated, using the organisation's published leadership contact arrangements.
The receiving officer should arrange an appropriately independent assessment, which may involve an external adviser or relevant authority depending on the nature of the concern.
Where a matter concerns statutory director duties, the operating company's applicable legal and governance requirements must be respected.
Individuals remain free to report matters directly to an appropriate regulator, statutory authority or emergency service where relevant.
An independent escalation route must be maintained so that complaints about the founder are not dependent on her personal approval or access to a shared mailbox.
Anyone involved in reviewing a complaint must disclose relevant conflicts of interest.
A conflict may arise through personal relationships, financial interests, professional affiliations or prior involvement in the disputed matter.
Where a conflict could compromise the fairness of the process, another appropriate person should be assigned.
Where necessary, independent external advice may be sought.
Related document:
Complaints may concern the behaviour of community members, volunteers, contributors, researchers or representatives of partner organisations.
Rare Disease Watch may assess whether the conduct breaches its participation requirements or Code of Conduct.
Possible actions may include clarification, warnings, restrictions on participation or termination of access.
Where conduct occurs outside Rare Disease Watch's services and authority, the organisation may have limited ability to intervene.
Nevertheless, relevant concerns may justify action concerning continued participation in the platform.
Related document:
Safeguarding & Code of Conduct Policy
Rare Disease Watch welcomes factual corrections and evidence-based concerns about its publications.
A complaint may relate to:
Editorial complaints should be assessed in accordance with the organisation's editorial standards.
A correction, clarification, update or withdrawal may be appropriate depending on the circumstances.
Disagreement with an editorial interpretation does not automatically establish an error.
Related document:
Concerns about directory listings may include inaccurate descriptions, unsupported claims, outdated contact details or questions about eligibility.
Rare Disease Watch may request clarification from the listed organisation or undertake additional review.
A listing may be corrected, restricted, suspended or removed where appropriate.
Directory inclusion does not constitute endorsement or guarantee the quality of an organisation's services.
Related document:
Directory Listing & Verification Policy
Rare Disease Watch may receive concerns about organisations participating in its partnerships, directory or introduction services.
Independent organisations remain responsible for their own conduct, services and legal obligations.
Rare Disease Watch may review whether a concern affects the organisation's continued participation or relationship with the platform.
Where appropriate, a complainant may be directed to the external organisation's own complaints process or a relevant professional or regulatory body.
Rare Disease Watch cannot guarantee the resolution of disputes involving independent third parties.
Complaints may contain personal, professional or sensitive medical information.
Such information must be handled in accordance with applicable data protection requirements.
Access should be restricted to individuals who need the information to assess or resolve the matter.
The identity of a complainant should not be disclosed unnecessarily.
Absolute confidentiality cannot be guaranteed where disclosure is required by law, necessary for fair consideration or justified by a significant safeguarding concern.
Complainants should be informed where material information needs to be shared, unless doing so would be inappropriate or unlawful.
Related document:
Data Protection & Privacy Policy
Rare Disease Watch will maintain a restricted internal record of formal complaints and significant concerns.
The record should include, where appropriate:
Information should be limited to what is necessary.
Records should be stored securely and retained according to documented retention requirements.
Safeguarding incidents must also be recorded through the separate confidential safeguarding incident record.
Access to those records should be restricted according to the sensitivity of the information.
Rare Disease Watch may consider anonymous complaints where sufficient information is available to assess the concern.
Anonymous reporting may limit the organisation's ability to seek clarification or provide a response.
Serious concerns should not be dismissed solely because the person reporting them has chosen not to identify themselves.
Where appropriate, action may still be taken to assess risks or protect individuals.
Rare Disease Watch does not permit retaliation against individuals who raise complaints or concerns in good faith.
Individuals must not be subjected to harassment, threats or inappropriate disadvantage because they have reported a concern or assisted with its review.
A complaint should not be treated as malicious merely because it cannot be substantiated.
Deliberately false or malicious allegations may be addressed under the relevant conduct procedures, but conclusions of this nature require an appropriate factual basis.
Rare Disease Watch recognises that individuals may remain dissatisfied after a complaint has been considered.
Repeated contact is not automatically unreasonable, particularly where new information or legitimate concerns arise.
In exceptional circumstances, the organisation may place proportionate limits on communication where behaviour becomes abusive, threatening or persistently obstructive.
Any restrictions should be documented, explained where appropriate and subject to suitable review.
Such restrictions must not prevent legitimate safeguarding disclosures, statutory rights requests or lawful reporting to external authorities.
This policy does not prevent individuals from seeking independent advice or exercising legal rights.
Depending on the nature of the matter, external routes may include:
The appropriate route depends on the circumstances and jurisdiction.
Rare Disease Watch will not require individuals to exhaust its internal complaints process before exercising a statutory right to approach an external authority.
Complaints provide an opportunity to identify problems that may not otherwise be visible.
Rare Disease Watch should periodically review complaints information to identify:
Findings may inform changes to policies, website functions, staff guidance or other organisational arrangements.
Where information is reported for governance purposes, unnecessary personal details should be excluded.
Executive Leadership
Responsible for administering the complaints process within delegated authority, ensuring appropriate records are maintained and escalating significant matters.
Founder
Dr Shara Cohen provides governance oversight and may consider escalated complaints where she is not personally implicated.
Designated Safeguarding Contact
Dr Shara Cohen is responsible for safeguarding oversight under the separate Safeguarding & Code of Conduct Policy.
Employees and Volunteers
Responsible for recognising complaints, referring them appropriately and maintaining confidentiality.
Operating Company Director or Directors
Retain ultimate statutory responsibilities for corporate governance and relevant legal obligations.
Material complaints involving legal, financial, reputational or safeguarding risks must be escalated appropriately.
This policy forms part of Rare Disease Watch's governance arrangements.
It should be reviewed when organisational responsibilities, services, applicable laws or complaints procedures change.
Material amendments require approval by an appropriately authorised director or directors.
Governance and Accountability
Safeguarding and Privacy
Membership and Participation
Editorial and Partnerships
