Job Description

About us

Join our team at the MPS Society, one of the leading rare genetic disease charities in the UK aiming to transform the lives of over 1500 individuals and their families UK-wide who are affected by MPS, Fabry and other related lysosomal diseases.

The Role:

We are expanding our small, dedicated, Support team who raise awareness, provide information and practical guidance alongside support and advocacy relating to health and social care, housing, education, transition, independent living, palliative care, and bereavement. This team also contribute to the development of our resources and facilitate project work such as youth engagement, advisory boards, and support groups.

Key Responsibilities:

The full responsibilities associated with this role can be found within the job description which is available on the MPS Society website.

Advice & Information

Gain a good understanding of the range of issues dealt with by the team and be able to respond sensitively and appropriately to all enquiries from members, professionals and the general public. Be the first point of contact (telephone/email/in-person), triaging enquiries as required. Provide basic information, signposting and support to MPS families and individuals. Support with the completion of routine forms. Accurately maintain data / communication records, filing / reporting systems, and online resources.

Team Support

Provide admin support to the Head of Support and Senior Support Officers as requested. Support the Senior Support Officers with the transition / transfer of membership from child to adult. Take responsibility for ensuring the database remains up-to-date and accurate. Schedule meetings/clinics and manage logistics (travel / accommodation) as requested. Support the team in collating feedback from member focused services/activities. Support senior employees with the identification and participation of members in research studies. Accompany other members of staff as needed to support the provision of the UK wide service. This will include some travel.

Experience & Skills:

As the ideal candidate, you will have:

GCSE grade 5+ (A-C) or equivalent in English & Maths. a sound understanding of the needs of people with disabilities and the systems that support individuals within health & social care. demonstrable experience of working with the general public in a health & social care or educational setting. exceptional verbal and written communication skills with professional interpersonal skills. excellent IT skills (Microsoft Office), including knowledge of a range of software packages. good organisational and time management skills. strong attention to detail. the ability to work flexibly and independently to meet the demands of the role. a collaborative mindset and enthusiasm for working in a small, dedicated team. tact, discretion, and respect for confidentiality. a caring, compassionate, empathetic, and supportive nature with a genuine interest in supporting others. be passionate about the MPS Society's mission and aims.

Essential requirements:

Eligibility to work in the UK. This is an essential car user post. The applicant must hold a current UK driving licence, with no more than 6 points and be willing to drive UK wide as required.

Disclosure & Barring Check (DBS) -

The MPS Society is a charity that provides a range of care, support and activities for children and adults at risk throughout the UK. This is provided through our dedicated support and advocacy service, telephone helpline and out of hours' support, clinical research, online activities and forums, annual events, patient expert meetings, focus groups and conferences. MPS staff, trustees and volunteers may be asked to be involved in the delivery of its regulated services and activities.

This post is exempt under the Rehabilitation of Offenders Act 1974. Due to the sensitive nature of the duties undertaking, the post holder will be expected to undertake a DBS check as part of the recruitment process.

This post is primarily based in our Amersham office however UK wide travel is necessary. A flexible approach to working hours to cover travel, our out of hours phone service, and events and conference attendance is required.

This is a full-time role (35 hours per week) however part time hours may be considered for the right candidate. Salary will be pro-rata for part time hours.

Next steps:

We encourage candidates to view the MPS Society website and ask that you please download the job description to see the full role responsibilities and essential requirements.

For an informal chat about the role or the work of the MPS Society, please contact Bethanie Pentecost.

Applications:

Please provide your CV along with a covering statement explaining how your previous roles and experiences make you the candidate we are looking for.

Whilst we have an initial closing date of 17 November 2025, we reserve the right to close this vacancy early if we receive enough suitable applications to take forward to interview and assessment.

Job Types: Full-time, Part-time, Permanent

Pay: 26,000.00 per year

Benefits:

Additional leave Company pension Health & wellbeing programme Life insurance On-site parking Sick pay Work from home
Application question(s):

Please briefly describe any experience you have supporting individuals or families to navigate health, social care, or education services (max 150 words) Do you have eligibility to work in the UK? Do you have a valid UK driving licence with 6 points or less, access to a car and a willingness to travel as required for the role?
Work Location: Hybrid remote in Amersham HP7 9LP