Social Media and Online Fundraising Manager

Alport UK is a patient-led organisation dedicated to empowering people living with Alport Syndrome to enjoy the best possible quality of life. Started in 2013, Alport UK works in a unique partnership with individuals, families and the scientific community to facilitate a support network for patients and families, be a conduit for information, raise the profile of Alport Syndrome in the scientific community, contribute to the international research agenda (through organising a series of annual international workshops sponsored by the pharmaceutical industry) and collaborate on the development of a UK patient registry and alliance of international patient registries. Alport Syndrome is a rare inherited kidney disease that can cause kidney failure, deafness and eye abnormalities.

Young people often require a kidney transplant in their late teens. To understand more about what we do, take a look at some very short two-minute videos created by young people living with Alport Syndrome:

• See a 2-minute film by one of our Alport Ambassadors, Sam Clarke: https://www.youtube.com/watch?v=fMrtfUV8GOI
• A short film made by Sam Clarke sharing highlights of our latest workshops in
• Cyprus: https://www.youtube.com/watch?v=HnwKsDMms8A and Singapore:
• https://youtu.be/DX59r0yALQ0
• Recordings of our Alport online workshops: https://tinyurl.com/y9cuhgby.
• Film about the Alport research hub https://youtu.be/eXrDx2Xjih4.

We are looking for a self-starting Social Media and Online Fundraising Manager to join the organisation to engage Alport patients, as well as other stakeholders such as clinicians and researchers, through online channels. This needs to be a self-funding role, where they inspire and engage people living with Alport to fundraise for Alport UK. The individual must have a positive outlook, be delivery focused, sensitive to the language required to communicate with people living with a life-long health condition that impacts their mental health, the ability to prioritise, be a thoughtful and a sensitive communicator with both patients and the international research network. The person also needs the ability to work independently (typically working from home), and as part of the small Alport UK team of employees and volunteers. The individual must have experience in creating engaging content on a range of social media channels, including Facebook, Instagram, X, Bluesky and LinkedIn with the outcome of engaging the audiences and building the Alport brands – Alport UK, creating a brighter future for those living with Alport Syndrome, and the Alport Syndrome Alliance, a global network advancing treatments and knowledge.

Benefits

• TBA - Employer’s pension contribution to NEST scheme.
• Available after 3 months in post.

Hours

• There is scope to work flexibly, particularly around school holidays.

Holidays

• 20 days, plus bank holidays, pro rata.
• Contract 12 months with planned renewal, subject to performance and funding.

Reporting to Chief Executive Officer (CEO).

Location

Online, with monthly team meetings in London, 3-4 in-person events/team meetings a year across the UK and if appropriate at international workshops. For example most recent workshop was in Beijing (China) and the next ones are in Budapest (Hungary- 2026) and San Paolo (Brazil -  2027)

Probationary period

3 months, with reviews monthly for the first three months and then annual formal reviews thereafter.

Checks and training

This person will communicate with patients direct and will need an advanced DBS check. As they potentially will communicate with vulnerable adults and possibly young adults, they will need to do advanced safeguarding training which we will fund.

Job summary

● To create a communication strategy for social media and a practical annual plan that incorporates the different type of content that will engage new stakeholders and to share some of the relevant information, knowledge and research for the different audiences. This strategy and plan must link into
Alport UK’s strategy and overall charitable objectives. Please see our recent annual report as useful context.
● To increase the level of engagement of various stakeholders, including eg:

o People living with Alport Syndrome – individuals and families in the UK and around the world
o Clinicians and laboratory scientists in various specialties – at all levels from early career doctors and researchers to the most senior professors
o Pharmaceutical companies – at all levels from those involved to leading and designing clinical trials to those who operate them
o Leaders and organisers we collaborate with, in many related charitable organisations.
● To create an online fundraising strategy and deliver a practical plan for a series of annual events (eg sporting - like the Great North Run - to support our focus on activities, personal challenges or social events) to engage people living with Alport Syndrome and potentially the Alport community of clinicians, laboratory researchers and friends of the Alport community.

● To advertise and engage people in participating in:
o Delivering fundraising to deliver an increased funding income stream for Alport UK
o National workshops, including patient information activities and events for Alport UK and
o International workshops for the Alport Syndrome Alliance – Alport UK is the main organiser and collaborates with a local national team eg in China, Canada, Cyprus or Italy.
● To personally engage patients and other stakeholders through social media, inviting them to events and offering them support from the wider team.
● To celebrate workshops and research achievements as they happen and to celebrate the people leading the research, the latest research projects and encourage people to participate in research and/or these workshops in the future. The person doing this role will, ideally, participate at in-person at
events in the UK and abroad, recording live content on social media in an accurate, sensitive and engaging way.
● To work well with the rest of the team, delivering the social media strategy and plan, online fundraising strategy and plan and income for Alport UK and connect people who reach out for support to the appropriate team member.

Principles for engagement

● Celebrate the past as it forms a good base to think about the future.
● Assume people living with Alport syndrome, particularly patients, are our key ‘customers’ and prioritise their needs ahead of other stakeholders such as the clinicians, laboratory scientists and funding organisations who support us.
● Continue to build on the methodical process of scheduling posts and building the brand that makes things more efficient and easy to operate.
● Each time you write engaging material to the different stakeholders you will engage, put yourself in the ‘shoes’ of the person and think about what motivates them, how busy they are and what would they find useful?
● Check what you write, say, do. It all sends a message about alport uk and the Alport Syndrome Alliance. It’s important to empathise with all and build the brands of Alport UK and the Alport Syndrome Alliance.

Skills required

● Communication and people skills:

Often being the first point of contact with Alport UK, the Social Media and Online Fundraising Manager will need excellent communication skills. The image of Alport UK, the Alport Syndrome Alliance and their services relies heavily on the ability of the manager to communicate effectively with a wide variety of people including patients, clinicians, researchers, team members. The individual should endeavor to develop good relationships with all those they come into contact with so those concerned are engaged in proofing and checking posts.

● Self-motivation, prioritisation and time management skills:

The Social Media and Online Fundraising Manager will need to be able to prioritise their work, organise their week and to possess excellent time management and organisational skills to be able to deal with a multitude of tasks and a range of priorities. All material must be proofread carefully.

● Information Technology skills:

The Social Media and Online Fundraising Manager will need strong IT skills and:
o be competent in the use of most Microsoft Office applications including Outlook, Word, Excel.
o have a basic knowledge of PowerPoint and online meetings software eg Skype or Zoom and MailChimp.
o good working knowledge of the main social media channels and other software to support their role in creating well-written and well- designed, content to engage people and share information.
o willing to learn to use additional software we use for social media, eg Social Pilot and Canva.

● Problem-solving skills:

The Social Media and Online Fundraising Manager will need to be practical, proactive, calm under pressure and able to use their initiative and manage their own time and organise other members of the team to provide what they need.
● An understanding of or interest in: the NHS or medical world and previous experience in the voluntary sector would be useful, but not essential.
● An understanding of online fundraising: proven experience of funding raised from online engagement of communities.

General responsibilities

● To help create, understand, adhere to and actively implement all the policies and procedures of Alport UK and its services at all times.
● To operate and comply with the provisions of the General Data Protection Regulation and relevant Alport UK policies on data protection during the course of undertaking the role.
● To safeguard children, young people and vulnerable adults at all times.
● To undertake training, as required.
● Assist with other work, communication and projects as needed.
● To undertake additional tasks reasonably requested by the CEO and the charity team. We are a small team and need to work flexibly to support other team members at key deadlines eg in-person events.

The successful applicant will be subject to a Disclosure and Barring Services check.

Why join Alport UK?

The impact of living with a life-long inherited kidney disease can be profound on individuals and families, with quality of life impacted through the huge number of hospital appointments, caring commitments and strains on mental health.

The aim of Alport UK is to help all people living with Alport Syndrome to have a brighter future. You will quickly find yourself making a difference by being part of Alport UK’s team, shaping and delivering activities and projects to improve the health and wellbeing of our community, and supporting our Executive Director and the team. You will be motivated by hearing the voices of our Alport community, who are very actively engaged in the running of the charity and provide practical input about the areas where we can do more to support them.

You will help deliver our critical work as the majority of our community connect online, monitor the impact we make, and above all, see us making a positive and long-term difference to those living with Alport Syndrome.

To understand what support the individuals and families value, it is worth you taking a look at:
 Our most recent Annual report and accounts with quotes from those we support.
 The impact report of the Alport Syndrome Alliance with facts and figures which celebrate 10 years of Alport UK’s efforts to facilitate the growth of the global network to advance treatments and knowledge.

Our small charity is a great place for new recruits looking to make a difference or seek a new challenge with an innovative and growing charity. You will also join our network of very welcoming and friendly, like-minded colleagues and volunteers. We hope the experience will help you learn new skills.

We look forward to receiving your application letter and CV. Please click on Apply Now.