Governance, Strategic Direction, Clinical and Scientific Expertise
Rare Disease Watch brings together professionals with experience in governance, organisational leadership, business development, healthcare, scientific research, rare diseases, patient advocacy and related fields.
Two advisory bodies support the organisation: the Advisory Board and the Medical & Rare Disease Council.
The Advisory Board focuses on organisational governance, strategy, sustainability, partnerships, funding, marketing and business development.
The Medical & Rare Disease Council provides specialist clinical, scientific and rare disease perspectives to inform the quality, accuracy and relevance of Rare Disease Watch's work.
Both bodies provide independent, non-binding advice to the organisation's leadership. Neither exercises statutory decision-making authority or manages day-to-day operations.
These Terms of Reference establish the purpose, responsibilities, membership arrangements, professional expectations and governance requirements applying to both bodies.
They form part of the Rare Disease Watch Governance Framework.
The purpose of the Advisory Board and Medical & Rare Disease Council is to strengthen Rare Disease Watch through independent advice, specialist knowledge, professional experience and constructive challenge.
Both bodies support the organisation's mission to make rare disease information easier to understand and create better opportunities for connection and participation.
Their contributions should help Rare Disease Watch develop responsibly, maintain appropriate professional standards, respond to the needs of its international community and pursue sustainable organisational development.
The two bodies have distinct but complementary responsibilities. Members are expected to contribute within their areas of expertise and recognise when matters require advice from other appropriately qualified individuals.
Rare Disease Watch operates through Honnao Ltd, a company registered in England and Wales under company number 12345498.
The Advisory Board and Medical & Rare Disease Council are consultative bodies. They are separate from the statutory director or directors of the operating company.
Appointment to either body does not constitute appointment as a company director and does not confer ownership rights, statutory governance powers or authority to make binding decisions on behalf of Rare Disease Watch.
Members may provide advice, make recommendations, identify opportunities and contribute professional expertise.
They may not enter into contracts, approve expenditure, direct employees or volunteers, or make legal, financial or operational commitments on behalf of Rare Disease Watch without express authorisation.
Ultimate responsibility for corporate governance, legal compliance, financial oversight and strategic direction remains with the operating company's director or directors.
Both bodies operate within the Rare Disease Watch Governance Framework.
The Advisory Board supports the organisational development and long-term sustainability of Rare Disease Watch.
Its principal responsibilities include the following areas.
Advising on accountability, organisational risk, governance arrangements, ethical standards, transparency and responsible decision-making.
Contributing to long-term priorities, organisational development, strategic planning and sustainable growth.
Identifying potential partnerships, sponsorship arrangements, funding opportunities and approaches to financial sustainability.
Advising on organisational positioning, communications, audience development, international visibility and stakeholder engagement.
Providing perspectives on membership development, services, commercial opportunities and sustainable organisational activities consistent with Rare Disease Watch's purpose.
Offering advice on leadership structures, accountability, succession planning, operational resilience and organisational effectiveness.
Advisory Board members are not expected to have expertise in every area. Contributions should reflect their individual experience and agreed responsibilities.
The Medical & Rare Disease Council supports the clinical, scientific and rare disease aspects of Rare Disease Watch's activities.
Its principal responsibilities include the following areas.
Providing practical perspectives from clinical practice, including diagnosis, treatment, care pathways and the challenges encountered by patients and healthcare professionals.
Advising on the interpretation and communication of research findings, clinical evidence, emerging developments and areas of scientific uncertainty.
Contributing specialist knowledge of rare conditions, patient experiences, research priorities and differences between healthcare systems.
Supporting the development of trustworthy, accurate, accessible and useful information for Rare Disease Watch's international community.
Providing informed perspectives on clinical trials, diagnostic developments, treatment advances, regulatory decisions and relevant scientific or healthcare initiatives.
Helping ensure that scientific and clinical discussions recognise the experiences, priorities and needs of people living with rare diseases and those who support them.
The Council provides advice and expertise rather than clinical services.
Its members do not provide individual medical consultations, diagnoses or treatment recommendations through their Council membership.
Council membership does not mean that every Rare Disease Watch publication has undergone specialist clinical review. Where formal review has taken place, the nature and scope of that review should be identified accurately.
The Advisory Board and Medical & Rare Disease Council have separate but complementary responsibilities.
The Advisory Board concentrates on organisational governance, strategy, sustainability and development.
The Medical & Rare Disease Council concentrates on clinical knowledge, scientific evidence, rare disease expertise and information quality.
Some matters may require contributions from both bodies. These may include research partnerships, healthcare collaborations, patient participation initiatives, organisational projects involving medical information and the development of new services.
Where appropriate, Rare Disease Watch may arrange joint discussions or seek advice from members of both bodies.
Neither body has authority over the other.
Membership of one body does not automatically confer membership of the other.
Both bodies report their recommendations through the organisation's established leadership and governance arrangements.
Members of either body may be appointed through an application process, invitation or professional recommendation.
Appointments are subject to assessment and approval by an appropriately authorised representative of Rare Disease Watch.
Selection may consider:
For the Advisory Board, particular consideration may be given to governance, organisational leadership, business development, fundraising, marketing, partnerships and strategic experience.
For the Medical & Rare Disease Council, particular consideration may be given to clinical qualifications, scientific expertise, rare disease specialisation, research experience, healthcare practice and relevant patient or community knowledge.
Rare Disease Watch aims to maintain complementary expertise and diverse perspectives across both bodies.
Appointments will be confirmed in writing, including the relevant advisory body, agreed term, responsibilities and applicable conditions.
An annual financial contribution may form part of the conditions of membership of either advisory body.
Where a contribution applies, the arrangements will be communicated before appointment and documented separately.
Contributions support the activities and development of Rare Disease Watch.
A financial contribution does not confer additional decision-making authority, editorial influence, preferential access to confidential information or rights beyond those expressly agreed.
Contributions do not guarantee favourable coverage, publication opportunities, commercial contracts, partnership arrangements or endorsement.
Financial terms, including payment arrangements and provisions relating to resignation or termination, are governed by the individual appointment agreement.
Members of both bodies are expected to act professionally, contribute constructively and support Rare Disease Watch's objectives and ethical standards.
Members should:
Members are not required to agree with every organisational decision. Independent advice and constructive disagreement are valuable contributions.
Members must distinguish between their personal professional opinions and official positions adopted by Rare Disease Watch.
Meetings of the Advisory Board and Medical & Rare Disease Council will be arranged according to organisational needs and member availability.
Meetings may take place remotely to accommodate international participation.
An agenda should be circulated where practical.
Significant recommendations, agreed actions and declared conflicts of interest should be recorded.
The Chief Executive Officer or another authorised representative will coordinate meetings and communicate relevant recommendations to the organisation's leadership.
Members may contribute outside formal meetings through individual discussions, working groups, professional introductions, document reviews or advice on specific matters.
Joint meetings may be arranged where issues require both strategic and clinical or scientific perspectives.
Recommendations from either body are advisory and are not binding on Rare Disease Watch.
Both bodies work alongside Rare Disease Watch's executive leadership while remaining distinct from operational management.
The Chief Executive Officer is responsible for day-to-day organisational leadership within delegated authority.
The Chief Commercial Officer is responsible for commercial development and partnership activities within delegated authority.
Members of either advisory body may provide advice to executive leadership but cannot direct employees, volunteers or contractors unless separately authorised.
Operational decisions remain with the individuals assigned to make them.
Significant matters requiring corporate approval must be referred to the operating company's director or directors.
Neither advisory body replaces the organisation's executive leadership or statutory governance arrangements.
Related document: Governance Framework.
Members of both bodies may have professional, financial or organisational relationships with pharmaceutical companies, biotechnology organisations, research institutions, healthcare providers, charities, patient organisations or other relevant bodies.
These relationships may contribute valuable expertise, but relevant interests must be disclosed.
Members must declare actual, potential or perceived conflicts of interest when joining and whenever relevant circumstances change.
Conflicts relating to particular discussions, recommendations, research activities, editorial matters or partnership opportunities must be declared before participation.
Where necessary, a member may be asked to withdraw from a discussion, refrain from making a recommendation or accept restrictions on access to information.
A disclosed conflict does not automatically prevent membership, provided it can be managed appropriately.
Financial contributions to Rare Disease Watch do not remove the requirement to disclose other relevant interests.
All members must comply with the Conflict of Interest Policy.
Rare Disease Watch is committed to publishing accurate, balanced and evidence-informed information.
Members of the Advisory Board may advise on publication strategy, organisational communications and audience development.
Members of the Medical & Rare Disease Council may contribute specialist advice on scientific accuracy, clinical relevance, evidence interpretation and the responsible communication of medical information.
Neither body has automatic authority to determine editorial decisions or require the publication, alteration or removal of material.
Formal editorial decisions remain subject to Rare Disease Watch's established editorial procedures.
Where a member contributes to or reviews a publication, the contribution should be appropriately documented, with relevant interests disclosed.
Membership does not entitle an individual or affiliated organisation to favourable coverage, publication opportunities or endorsement.
Members must not use their position to influence the reporting of research findings, clinical information or editorial conclusions for personal, professional or commercial advantage.
The Medical & Rare Disease Council may advise on whether specialist review is necessary, but the organisation must not imply that material has been clinically reviewed unless that review has actually occurred.
Related documents:
Members of either body may receive non-public organisational information in connection with their responsibilities.
Such information may include strategic plans, financial information, partnership discussions, unpublished research-related material, internal procedures or other confidential information.
Members must not disclose confidential information or use it for unauthorised personal, professional or commercial advantage.
Membership does not provide unrestricted access to member profiles, personal contact details, medical records, health information or other confidential personal data.
Access to personal information must be authorised, necessary for a legitimate purpose and consistent with applicable data protection requirements.
Where clinical or scientific material includes sensitive personal information, appropriate safeguards and permissions must be established before it is shared.
Confidentiality obligations may continue after membership ends.
Related documents:
Members of both bodies may identify relevant professional contacts, partnerships, research collaborations, funding opportunities or other relationships that support Rare Disease Watch's objectives.
The Advisory Board may provide advice on commercial, organisational and strategic considerations.
The Medical & Rare Disease Council may provide advice on scientific credibility, clinical relevance, research quality and potential implications for patients.
Proposed partnerships must be assessed through the organisation's established processes.
Members must disclose interests in organisations, activities or transactions they recommend.
No member may negotiate or enter into binding arrangements on behalf of Rare Disease Watch without appropriate authorisation.
Commercial relationships must not compromise editorial independence, patient confidentiality, scientific integrity or meaningful community participation.
Related documents:
Rare Disease Watch recognises that people living with rare diseases, their families and carers bring knowledge and perspectives that are important to research, healthcare and organisational development.
Members of both bodies should support meaningful, respectful and informed participation.
Members should not assume that one patient, carer or advocate represents the views of an entire rare disease community.
Where members assist with patient involvement activities, they must respect consent, confidentiality, accessibility and applicable compensation arrangements.
The organisation commissioning a patient or carer involvement activity is responsible for paying all agreed compensation and reimbursable expenses, unless Rare Disease Watch has expressly accepted that responsibility in writing.
Participation opportunities must not be represented as guaranteeing research enrolment, treatment access or payment.
Related documents:
Members of both bodies must maintain appropriate professional standards in their interactions with employees, volunteers, contributors, patients, families, carers and external organisations.
Discrimination, harassment, intimidation, exploitation and misuse of confidential information are not acceptable.
Members must respect the dignity, privacy and autonomy of individuals involved in Rare Disease Watch activities.
Concerns about safeguarding, inappropriate conduct or organisational practices must be raised through the appropriate reporting channels.
The named safeguarding contact is Dr Shara Cohen, Founder of Rare Disease Watch.
Where a concern involves the named safeguarding contact, it should be referred to another appropriately authorised person who is not implicated in the matter.
Safeguarding incidents and concerns will be documented in a restricted incident record, with access limited to authorised individuals.
Members must comply with the Safeguarding & Code of Conduct.
Concerns may also be raised through the Complaints & Concerns Policy.
Members may identify themselves publicly as members of the Rare Disease Watch Advisory Board or Medical & Rare Disease Council, as applicable, while their appointment remains active.
Use of Rare Disease Watch's name, logo or other branding must comply with applicable communications and brand requirements.
Members must not imply that Rare Disease Watch endorses their personal opinions, professional activities, products, services or affiliated organisations without express authorisation.
Public statements made on behalf of Rare Disease Watch require appropriate approval.
Professional titles, qualifications and affiliations must be represented accurately.
Members must not imply that Council membership constitutes clinical accreditation, professional certification or endorsement of their medical practice.
Appointments to either body will be made for a period agreed and confirmed in writing.
Appointments may be renewed by mutual agreement, subject to organisational needs, the member's contribution, compliance with applicable policies and any agreed membership conditions.
Rare Disease Watch may periodically review the composition of both bodies to ensure that they continue to provide relevant expertise and perspectives.
Renewal is not automatic unless expressly provided for in the individual appointment agreement.
Members may resign by providing written notice in accordance with their appointment agreement.
Rare Disease Watch may terminate an appointment where a member:
Where practical and appropriate, concerns should be communicated to the member before a final decision is made.
Termination decisions must be made by an appropriately authorised person, with relevant conflicts of interest managed.
Any financial arrangements following resignation or termination will be governed by the individual appointment agreement.
Following termination, the individual must cease representing themselves as a current member of either body and discontinue unauthorised use of the organisation's name or branding.
These Terms of Reference are maintained under the authority of the operating company's director or directors.
They may be amended to reflect changes in organisational activities, governance arrangements, the responsibilities of either advisory body or applicable legal requirements.
Amendments require approval by the appropriately authorised director or directors.
Members will be informed of material changes affecting their responsibilities or conditions of membership.
The following documents provide further information about Rare Disease Watch's organisational responsibilities, ethical standards and operating principles.
Organisational Governance
Editorial and Contributor Standards
Partnerships and Participation
Information and Conduct
