Vacancies

PWS Specialist Advisor for Northern Ireland

If you are passionate about making a difference for PWS families in Northern Ireland, we want to hear from you!

PWSA UK is a small charity providing lifelong support to all those affected by Prader-Willi Syndrome (PWS). PWS is a rare genetic condition causing an overwhelming and uncontrollable drive to eat that can be life-limiting, as well as learning and physical disabilities. We provide a dedicated helpline, a comprehensive information hub, a network of peer support groups, a varied programme of community events, training for professionals working with those with PWS, and support for vital research. Our aim is to help our amazing community overcome the challenges and live life to the full with PWS.

We are looking for a part time PWS Specialist Advisor for Northern Ireland to support the PWS community in Northern Ireland. PWS is a rare and isolating condition and our ambition it to reach families in Northern Ireland to provide impactful advice, support, information and training. The ideal candidate will have an in-depth working knowledge of health and social care systems and education in Northern Ireland as well as a belief in the potential and value of people with Prader-Willi syndrome. 

You will need to be able to demonstrate excellent interpersonal and communication skills, as well as being self-motivated and able to engage with families, health care professionals and policy makers. You will build on the excellent work of our existing support worker to continue engage and enable the PWS community. 

The position is part time (14 - 18 hours a week) and is home based and ideal for someone living in Northern Ireland.

If you want to help us drive forward with our ambitions in Ireland – For more information about the or to apply for the position visit Charity Job.

Applications close 9am Monday 12th October 

Interviews will be by Zoom on Thursday 15th October 2026 

If you would like to discuss this opportunity please email Jackie Lodge jlodge@pwsa.co.uk 

Fundraising Manager – Major Giving

Remote | Part-time / flexible working hours | New role

PWSA UK is looking for a relationship-focused fundraiser to grow income from major donors, corporates, trusts and foundations, including pharmaceutical companies. This new role will help build lasting supporter relationships and secure significant gifts that make a meaningful difference for people with Prader-Willi syndrome and their families.

About the role

You will identify, cultivate, solicit and steward prospective and existing supporters, developing tailored communications, proposals and engagement opportunities that connect donors’ interests with PWSA UK’s mission. Working with colleagues, trustees and volunteers, you will manage relationships, support donor meetings and events, and maintain accurate donor records and pipeline information.

• Build and manage a portfolio of prospective and existing major donors.

• Research and identify new supporters and relationship opportunities.

• Develop persuasive proposals, cases for support and donor communications.

• Support cultivation, stewardship, meetings, visits and events.

• Keep accurate records, forecasts and pipeline reports.

About you

You will be an excellent communicator, careful researcher and organised relationship manager, with experience in major giving, corporate fundraising, or trusts and foundations. You will be confident working with donors and senior stakeholders, handle sensitive information with discretion, and share PWSA UK’s commitment to supporting people with Prader-Willi syndrome.

Why join us?

This is an opportunity to shape a new fundraising role within a specialist charity and help grow high-value support for PWSA UK’s work.

How to apply

For more information about the or to apply for the position visit Charity Job.

For an informal conversation about the role please contact jlodge@pwsa.co.uk.

Fundraising Manager – Individual Supporters

Remote | Part-time / flexible working hours | New role

PWSA UK is looking for an individual who is experienced in individual supporter fundraising, capable of growing our income from our community network, individual givers including seasonal and capital campaigns. You will have the drive to make a difference for our stakeholders, be able to build strong supporter relationships at a distance and create compelling proposals that connect donors with PWSA UK’s mission and will enjoy working independently in a small team. 

About the role

You will manage and maintain a regular giving programme for new and existing supporters, developing tailored communications, proposals and engagement opportunities for the community that connect donors’ interests with PWSA UK’s mission. Working with colleagues, trustees and volunteers, you will support community fundraising, establish an effective individual giving programme using the CRM and increase the number of legacy pledges achieved over time.

• Build and manage an individual giving programme.

• Support and build upon the community fundraising activity

• Develop persuasive campaigns, cases for support and donor communications.

• Maintain the CRM and utlise it to its full potential

• Keep accurate records, forecasts and pipeline reports.

About you

You will be an excellent communicator, careful researcher and organised fundraising manager, with experience in individual giving and community fundraising. You will be confident communicating with donors and senior stakeholders, handle sensitive information with discretion, and share PWSA UK’s commitment to supporting people with Prader-Willi syndrome.

Why join us?

This is an opportunity to shape a new fundraising role within a specialist charity and help grow high-value support for PWSA UK’s work.

How to apply

For more information about the or to apply for the position visit Charity Job.

For an informal conversation about the role please contact jlodge@pwsa.co.uk.

At PWSA UK, our committed board of trustees helps guide the vital work we do for people with Prader-Willi Syndrome and their families.

They’re supported by a small but mighty staff team, including our experienced Finance and Operations Manager, who takes care of the day-to-day financial work.

We’re looking for a treasurer to join our board - someone who can bring their financial know-how to help us keep a watchful, informed eye on our charity’s finances and provide supportive oversight.

Your role will be about guidance and reassurance, ensuring we remain on steady ground so our team can focus on delivering life-changing support.

What we’re looking for:

• Finance qualifications and experience

• Able to commit to quarterly meetings

• Supportive, collaborative, and enabling

• A genuine commitment to our cause

If this sounds like you, we’d love to hear from you.

Contact Jackie jlodge@pwsa.co.uk for an informal chat.

We are seeking Outreach Volunteers to provide support and information to parents and carers at PWS clinics.

PWS clinics within hospitals and health trusts are run by the Lead Consultant and PWSA UK are invited to attend to provide support and guidance to parents and carers for non-medical issues.

These could be anything from concerns about their child’s education, to just needing a supportive ear from someone who understands the challenges of PWS.

Outreach Volunteers based within clinics will be lone volunteers once their initial induction is completed and, as such, will need to be confident in working with a degree of autonomy whilst representing PWSA UK, adhering to organisational guidance and policy.

Commitment:

Attendance at your allocated PWS Clinic as agreed with your named PWSA UK PWS Specialist Advisor.  This may vary depending on the length and frequency of the clinic and will be agreed in advance. Clinics are held monthly or Quarterly for a maximum of up to 5 hours.

Main Duties:

Under the guidance of, and in agreement with, your named PWSA UK PWS Specialist Advisor;

• Attendance at designated PWS Clinic; to be guided by PWSA UK, in partnership with the consultant in charge of the clinic.

• Liaison with health professionals and other agencies supporting at PWS clinics.

• To provide support and information to parents/carers attending the clinic about non-medical issues relating to PWS.

• Signpost parents/carers to PWSA UK for more detailed information and support.

• Raise awareness of, and encourage membership of PWSA UK as part of your role as the Outreach Volunteer.

• Where appropriate, and with agreement from PWSA UK; provide and make available leaflets and booklets relating to PWS and relevant local information. 

• With the consent of the parent/carer; maintain and keep an accurate record of Parents/Carers spoken to and any follow up actions required by PWSA UK. 

• To report back to PWSA UK (using the Volunteer Support Log form) information relating to date and place of clinic; how many families you interacted with and approximate ages of children; any other relevant information.

• To dispose of any papers containing personal information in confidential waste.

• To maintain personal boundaries and adhere to organisational policy and guidance regarding safeguarding and confidentiality.

Reports to:

You will have a named PWSA UK PWS Specialist Advisor who will work in partnership with you, providing help and advice as appropriate.

Our expectations of Clinic Support Volunteers:

• Before attendance at a PWS Clinic all volunteers must have completed the recruitment process and induction and have PWSA UK’s approval.

• Adherence to PWSA UK guidance, policies and procedures including Confidentiality, Safeguarding and Expenses.

• Regular and open communication with your named PWSA UK PWS Specialist Advisor. 

• Notification, as soon as is practicable, if you are unable to keep your commitment.

• Participation in ongoing training and supervision as required for the role.

What you can expect from us:

• A comprehensive induction and training programme. 

• Regular communication with, and support from your allocated PWS Specialist Advisor.

• Clear parameters and expectations for the role. 

• Individual and group supervision to support you in your role.

• Expenses covering your travel and refreshments whilst volunteering in accordance with PWSA UK policy and guidance.

• A friendly and supportive team who all share the goal of improving life for people with PWS.

If you would like to support the PWS Clinics, please email admin@pwsa.co.uk

We are seeking a Volunteer Trainer to support the delivery of the BOSS programme, a structured social skills and confidence-building course for adults with Prader-Willi syndrome (PWS). 

See the full role description here 

Volunteer Trainers commit to being trained in the BOSS model and, once trained, co-facilitate courses alongside experienced lead facilitators.

About the BOSS Programme: 

BOSS is designed to help participants build social understanding, confidence, and independence in a structured, supportive group environment. Each course runs over 15 weeks, supports up to six participants, and is delivered by a consistent team of trained facilitators.

Main Responsibilities

Before the programme:

• Complete BOSS facilitator training and induction
• Familiarise yourself with materials and session plans
• Attend planning and briefing sessions

During the programme:

• Co-facilitate 2 x weekly sessions alongside the lead facilitator

• Support activities, discussions, and breakout groups

• Help maintain a safe, respectful, and inclusive environment

• Model positive communication and boundaries

After and between sessions:

• Take part in facilitator reflection and feedback

• Share observations that support participant progress

 Time Commitment

• Initial training and induction (2 x 4-hour sessions via Teams/Zoom)
• Commitment to the full 15-week BOSS course (2 x 1-hour sessions, with 15 mins prep and reflection either side)
• Occasional planning or review meetings as required

Skills and Qualities

Essential:

• Interest in supporting adults with learning disabilities or PWS
• Willingness to learn and follow the BOSS model
• Reliable and able to commit consistently
• Experience in facilitation, education, or support roles
• Familiarity with online platforms such as Teams or Zoom

Desirable:

• Qualifications in teaching or training
• Proven track record of facilitating online training
• Experience in working with adults with Prader-Willi Syndrome

Tech requirements

• A laptop, headphones and access to BOSS course materials will be provided for the duration of your facilitation on this BOSS course. These remain the property of PWSA UK.

• You will need a secure and reliable internet connection in a private space.  

Training and Support

Volunteer Trainers receive structured training, ongoing support from lead facilitators, access to programme materials, and opportunities for learning and development throughout their involvement.

How to apply

To apply for the Volunteer Trainer role, please complete this Volunteer Application Form by Sunday 5th July.

Shortlisted applicants will be invited to an informal discussion. All volunteers will be required to complete safeguarding DBS checks and training before delivering sessions.