Families Liaison Officer

Families Liaison Officer
Purpose of the role
To support the aims, objectives and values of Ring20 Research & Support and, in particular, to proactively support families affected by Ring Chromosome 20 Syndrome (r(20)) by strengthening engagement, improving access to support, and helping to build a resilient, informed and connected global community. The role contributes directly to the charity’s public benefit by ensuring families affected by r(20) can access appropriate support, information and opportunities to engage.
The Families Liaison Officer will act as a key point of contact for families, coordinate and develop family support services, and ensure that family voices directly inform the charity’s strategy, communications, research engagement and service development.
________________________________________
Terms of service
• 0.4 FTE / 2 days per week, specific days/times to be agreed with flexibility to work across the week.
• Home-based, with occasional travel to attend conferences, meetings or family events as required.
• Some evening or weekend work may be required to support online meetings or international engagement.
• Participation in regular online team meetings, training, and occasional Trustee Board meetings as required.
• Three-month probationary period.
________________________________________
Overall responsibilities
• Support families affected by r(20) throughout their journey, ensuring they feel informed, connected and supported.
• Act as a primary liaison between families, Ring20 staff, volunteers, Trustees and external partners.
• Maintain the confidentiality, safety and welfare of families and beneficiaries at all times.
• Empower families by increasing peer-to-peer connections and access to relevant information and services.
• Contribute to the ongoing development, evaluation and improvement of Ring20’s family support services.
• Operate within Ring20’s governance framework, policies and delegated authority, supporting effective trustee oversight and accountability.
• Identify, escalate and record safeguarding concerns in line with Ring20 safeguarding policies, acting as an initial point of contact where appropriate.
________________________________________
Responsible to
• Ring20 Board of Trustees
Line Manager: Chief Executive Officer
________________________________________
Specific areas of responsibility
The Families Liaison Officer develops and maintains effective support services for families affected by r(20). This is achieved by:
Family support and engagement
Family support is the core focus of this role, with the post-holder prioritising responsive, compassionate and consistent support to families affected by r(20).
• Hosting and managing the Ring20 family helpline during working hours (phone, email and messaging platforms), responding to enquiries within agreed timescales, using agreed triage, escalation and recording procedures, and recognising when to refer families to external statutory or specialist services, with support from the CEO where appropriate.
• Refining and automating onboarding processes where possible.
• Moderating the closed Ring20 Families Facebook Support Group, ensuring compliance with Ring20 safeguarding, data protection and social media policies, and escalating any safeguarding concerns in line with procedure.
• Organising and hosting regular online family meet-ups (e.g. Coffee and Chat sessions) to encourage peer connection.
• Supporting families with fundraising ideas and events, liaising with volunteers and Trustees as required.
• Supporting Ring20 Champions, attending regular calls and following up on agreed actions.
Development of family support services
Ensure service development activity supports the charity’s strategic objectives as agreed by the Trustee Board.
• Proactively seeking feedback from families on their needs through:
o Annual surveys
o One-to-one conversations
o Focus groups on specific topics
• Recording, analysing and summarising feedback to inform service development and strategy.
• Providing regular insight and recommendations to the Chief Executive Officer and Trustee Board, including identification of emerging risks, unmet needs or safeguarding themes.
• Supporting the development of educational materials for families, clinicians and wider professionals.
• Providing support for the Ring20 Families Conference and other family workshops/events as required.
Communications and community building
• Curating and drafting content for quarterly e-newsletters, blogs and website updates including Personal Stories, for CEO review and approval.
• Providing regular social media content input to Ring20’s communications partners, highlighting community successes, common unmet needs and relevant topics.
• Monitoring social media and wider developments relevant to the r(20) community.
Data, systems and reporting
• Supporting the ongoing population of Ring20’s CRM system, ensuring accurate and up-to-date records.
• Maintaining data on family members, donors and other stakeholders in line with data protection requirements.
• Monitoring KPI dashboards and management reports for quarterly Trustee Board meetings.
Research engagement
• Supporting recruitment of families to Ring20 research studies.
• Facilitating Q&A sessions with families and helping to develop FAQs to support informed participation.
• Supporting dissemination of research results to families in simple language and formats they can understand.
________________________________________
Experience and skills
The Families Liaison Officer will:
• Have experience in a similar support, liaison or coordination role, ideally within health, disability or rare disease communities.
• Be confident communicating with families from diverse backgrounds and with varying needs.
• Have experience of working collaboratively with peers and professionals, volunteers or trustees.
• Demonstrate strong organisational skills and the ability to manage competing priorities.
• Be comfortable working remotely as part of a small team.
• Have a strong commitment to improving the lives of families affected by long-term or rare conditions.
Desirable
• Experience or knowledge of rare diseases, complex health conditions or patient support groups.
• Experience with CRM systems, data management or reporting.
• Experience supporting online communities or peer support groups.
• Knowledge of safeguarding principles and data protection requirements.
________________________________________
Skills and knowledge
• Excellent written and verbal communication skills.
• Strong IT skills, including confidence using databases, online meeting platforms and digital communication tools.
• Ability to work independently, use initiative and develop practical solutions.
• Commitment to equality, diversity and inclusion.
• Willingness to develop a working knowledge of Ring Chromosome 20 Syndrome.
• Ability to maintain accurate records and comply with Ring20 policies and procedures.
________________________________________
Confidentiality and safeguarding
• The confidential nature of the work requires strict adherence to data protection and confidentiality at all times.
• The role will require an enhanced DBS check.
________________________________________
The responsibilities outlined above form the core of the Families Liaison Officer role. The post-holder may be asked to undertake additional duties consistent with the role as required by the charity.