Volunteering Opportunities

At Haemochromatosis UK we provide advice and support to people with genetic haemochromatosis across the UK. We educate, inform and support people through our website and publications, social media, training for professionals and our public awareness campaigns.We’re seeking enthusiastic and skilled volunteers with an interest in haemochromatosis to help represent Hemochromatosis UK at national conferences and events. The purpose of this role is to maximise our impact at conferences and enable us to reach as many people as possible across the UK with information about GH.We attend several conferences per year; these roles are fully expensed (travel, accommodation, meals) in line with our expenses policy.To get involved or to arrange a no-obligation discussion, register your interest!What are the benefits of being a Volunteer Advocate?Be part of a team of volunteers and meet new peopleEnjoy the satisfaction that comes from helping others Increase your confidence, communication and interpersonal skillsDevelop new skills, useful in other areas of your lifeGet the chance to attend clinical and medical conferences to learn more about GHWhat is the time commitment?Varies from event-to-event, but typically 1-2 days between 9am and 5pm on weekdaysWhat's involved?Help us to staff our conference standInteract with conference attendees, engage their interest and answer their questions about GHHonour the time commitments you make and to give reasonable notice if this is not possible.What's NOT involved?We do not expect our volunteers advocates to :Give medical advice, unless medically qualified to do soWhat skills are useful in this role?To be able to communicate effectivelyThe ability to work equally well in a team and unsupervised.An interest in, knowledge of or willingness to learn about haemochromatosis.Be confident meeting and speaking to new people.What equipment is needed?NoneWhat support will you be given?Volunteer induction and trainingOn-going support by an allocated person from Haemochromatosis UKPeriodic volunteer meetings (quarterly).Opportunities to become involved in other Haemochromatosis UK activities.

At Haemochromatosis UK we provide advice and support to people with genetic haemochromatosis across the UK. We educate, inform and support people through our website and publications, social media, training for professionals and our public awareness campaigns.We’re seeking enthusiastic and skilled volunteers with an interest in haemochromatosis to help provide the Hemochromatosis UK Buddy schemeBuddy Scheme VolunteerAs a Buddy scheme volunteer you will help to support people newly diagnosed or experiencing anxiety due to Haemochromatosis. This role provides vital support and encouragement to people, who are often feeling particularly vulnerable at this stage of their journey.Time Commitment1-2 hours a week on average. The role is ongoing. Key TasksReview referrals from our helpline coordinator/specialist nurse and select one or more people to “buddy-up” with in response to a referralArrange to contact the referred “buddy” by telephone in line with the Buddy Scheme process to talk and listen to themComplete a Buddy scheme report online for each appointment completedRespond appropriately to questions, concerns and any distress of your buddy, using your trainingExplore what practical or emotional issues buddies need to talk through and to provide good quality information at the right level.Signpost buddies (without giving medical advice) so that they can consider and choose for themselves what they want to do or happen next.Maintain strict confidentiality.Honour the time commitments you make and to give reasonable notice if this is not possible.We do not expect you to doGive medical advice.Interact with the person you are supporting face-to-face (only by telephone).Share your personal details.Relevant Skills, Competencies and ExperienceHave personal lived experience of genetic haemochromatosisTo be able to communicate effectively, show empathy and patience.Have a good understanding of confidentialityThe ability to work equally well in a team and unsupervised.Be confident meeting and speaking to new people.Equipment neededA computer or smartphone with access to the internet.A Voiphone mobile app will be provided to enable you to make and receive calls for the Buddy scheme. This is fully expensed.What support will you be given?Volunteer induction and training with opportunities to attend online volunteer meetingsOn-going support by an allocated person from Haemochromatosis UKA Voiphone mobile appOpportunities to become involved in other Haemochromatosis UK activities.What are the benefits of being a Volunteer Helpliner?Development of communication skillsFree training relevant to the role will be providedUse your skills and experience to contribute to the success of Haemochromatosis UKReferences to add to your CVBe part of a team of volunteers and meet new peopleIncrease your confidence and interpersonal skills.Getting Involved – Next StepsTo get involved or to arrange a no-obligation discussion, register your interest!Register your interest in volunteeringBefore starting to volunteer with us, all volunteers must complete :A signed copy of our Volunteering agreementUndertake and pass our online Safeguarding eLearning moduleUndertake (and pass) a DBS check (arranged by our charity at our cost)As a volunteer you will be a valued part of Hemochromatosis UK and your efforts will contribute to improving the lives of people with haemochromatosis.

At Haemochromatosis UK we provide advice and support to people with genetic haemochromatosis across the UK. We educate, inform and support people through our website and publications, social media, training for professionals and our public awareness campaigns.We are seeking enthusiastic and skilled volunteers with an interest in Haemochromatosis to help provide information on our Facebook support group.Volunteer ModeratorThe purpose of this role is to maximise our impact and enable us to offer support services to as many people as possible, whilst directing participants to correct information. As a volunteer Moderator you will help signpost our community to the relevant sections on the website if they have asked a question. Delete any comments not in line with the group rules and acceptable usage policy. Block or mute participants if necessary.  Time CommitmentThe role is ongoing and can be completed at any time 24/7 which is convenient to the volunteer (weekends and evenings tend to be busier). This role is rostered alongside other volunteer moderators for one week at a time on a 1 week in 4 basis and takes 2-3 hours per month.Key TasksHelp Haemochromatosis UK to moderate social media channels.Respond appropriately to questions and signpost to HUK website, though with regard this is a public forum.Stimulate and guide constructive discussion, without giving medical advicePost appropriate linksBlock or mute participants if necessary, in consultation with staff.Delete any comments not inline with group rules or acceptable usage policy and of factually incorrect.Adopt and adhere to the procedures and standards set out in the acceptable use and social media policies.Maintain strict confidentiality.Protect the Charity’s brand and reputation.Honour the time commitments you make and to give reasonable notice if this is not possible.To approve posts.We do not expect you toGive medical advice.Share your personal experience or any personal details.Relevant Skills, Competencies and ExperienceTo be able to communicate effectively, show empathy and patience.Have a good understanding of confidentiality.The ability to work equally well in a team and unsupervised.An interest in, knowledge of or willingness to learn about haemochromatosis.Knowledge of HUK website and Charity.Equipment neededA computer or smartphone with access to the internet.Social media account (Facebook)What support will you be given?Volunteer induction and training with opportunities to attend online volunteer meetingsOn-going support by an allocated person from Haemochromatosis UKOpportunities to become involved in other Haemochromatosis UK activities.What are the benefits of being a Volunteer?Development of communication skillsFree training relevant to the role will be providedUse your skills and experience to contribute to the success of Haemochromatosis UKReferences to add to your CVBe part of a team of volunteers and meet new peopleGetting Involved – Next StepsTo get involved or to arrange a no-obligation discussion, register your interest!Register your interest in volunteeringBefore starting to volunteer with us, all volunteers must complete :A signed copy of our Volunteering agreementUndertake and pass our online Safeguarding eLearning module and social media moderation training (delivered online by Zoom)Undertake (and pass) a DBS check (arranged by our charity at our cost)As a volunteer you will be a valued part of Hemochromatosis UK and your efforts will contribute to improving the lives of people with haemochromatosis.

Fundraise!We depend on volunteer and community fundraising to keep going every year. Every penny you raise in aid of Haemochromatosis UK will help in the fight against iron overload.STEP 1: Choose Your Event/Activity.You know that thing you do,  or have always wanted to. Well now's the time to put it to good use! Do your thing to help us do our thing, whether it is walking, running, cycling, rowing or anything that absolutely doesn't involve exercise! Perhaps one of the most rewarding ways of raising funds is to take part in a fundraising event. We have many suggestions for fundraising events available to book right now. We also have funded places from time to time on particular events, such as the wonderful London Landmarks Half Marathon.You can also organise your own activity, such a a Little Iron Brew or a Great Iron Brew. These are simply tea/coffee mornings or bake sales (small or larger) with friends or people in your local community. You could hold a Get Your Irons Out Golf Day or a fundraising event in your workplace.STEP 2: Set Up Your Sponsorship Page, Collect DonationsYou can set up your own sponsorship page on JustGiving. The money raised then comes directly to us, including Gift Aid were applicable.STEP 3: Do the eventTake part in your event and share your story with us - photos always help us tell the story. If you have raised money offline it can be paid in here. Pay In Money.Your fundraising allows us to continue our vital work to prevent ill health and save lives. You are helping us to make iron overload a thing of the past.All the money you raise will go directly to helping people with genetic haemochromatosis, educating nurses and doctors about the condition, greater awareness with the general public and more research into the condition.Openings available, various opportunities, contact fundraising@huk.org.uk for help

The National Lottery has awarded Haemochromatosis UK funding for a pioneering new 5 year programme, to advise and support communities at risk of iron overload from genetic haemochromatosis (GH) throughout England (#), across five key areas :Improving public awareness of the conditionStimulating family awareness of symptoms & helping families at risk to talk about GHDelivering cascade genetic screening for families at riskProviding genetic counselling & support for anyone diagnosed with genetic haemochromatosis, particularly in communities at increased risk of iron overloadImproving care pathways to include wider provision and uptake of blood donation servicesWe are seeking volunteers to join the programme steering group, to help shape the programme and advise on its implementation over the years 2024-2029. Initially, Steering Group membership will be for one year, renewable annually thereafter.We're looking for representation from all regions of England (#) from people of all ages and backgrounds, with lived experience of GH.  Steering group members will be consulted on their local GH priorities for screening, genetic counselling and care pathways as part of this England-wide initiative.To get involved or to arrange a no-obligation discussion, register your interest!Please note : we are presently seeking expressions of interest in joining the Steering Group from January 2025.Register your interest in volunteering(#) Please note that the funding for this programme has been specifically provided by the National Lottery for work across England. and so we are specifically seeking volunteers in England at this time. As a national charity, we are continuing to seek financial support to roll out this programme to Wales, Scotland & Northern Ireland.What are the benefits of being a Steering Group Volunteer?Get the chance to collaboratively help shape this major new initiative and help people affected by - or at risk of - GHBe part of a team of volunteers and meet new peopleEnjoy the satisfaction that comes from helping others Increase your confidence, communication and interpersonal skillsDevelop new skills, useful in other areas of your lifeWhat is the time commitment?The steering group will meet periodically for 60-90 minutes by Zoom.We expect there will be some pre-meeting reading from time-to-time, which may require a further 30-60 minutes per quarter.We anticipate that steering group members may meet once per year face-to-face for an all-day workshop. Travel expenses and accommodation will be provided.What's involved?Meet quarterly by Zoom with the charity's programme team to review and discuss proposed programme approaches and outlinesShare your local GH priorities for screening, genetic counselling and care pathwaysOnce per year, attend a face-to-face all-day workshop to develop specific programme ideas and oversee progressInteract with others at risk of or affected by GH, including HUK members, members of the public, clinicians, elected representatives and other stakeholdersHonour the time commitments you make and to give reasonable notice if this is not possible.What's NOT involved?We do not expect the steering group volunteers to :Undertake or initiate specific project delivery - this is an advisory roleWhat skills are useful in this role?To be able to communicate effectivelyThe ability to work well in a team, to listen to others and be respectful of peoples' views even when they don't match your ownAn interest in, knowledge of or willingness to learn about haemochromatosis.Be confident meeting and speaking to new people.What equipment is needed?NoneWhat support will you be given?Volunteer induction and trainingOn-going support by an allocated person from Haemochromatosis UKOpportunities to become involved in other Haemochromatosis UK activities including our quarterly volunteer virtual get-togethers

In 2025, we undertook 2 ground-breaking research projects. The first one focused on standards of ongoing care and treatment for haemochromatosis patients based in Lincolnshire, and the second explores quality of life for those living with the condition nationwide. We want to make our findings available to the public, by sharing our research in a way that is accessible, engaging and easy to digest. To that end, we are seeking support to design two booklets and virtual flip books that clearly communicate our findings, while also bringing a creative perspective to the presentation.These designs will enable us to share our research far and wide. We will be able to deliver presentations on the wider impacts of our research and discuss how local support services can be improved to ensure better care, treatment, and quality of life for people living with haemochromatosis in Lincolnshire and beyond. To get involved, or to arrange a no-obligation discussion, register your interest!What are the benefits of being a Volunteer Graphic Designer? Make a meaningful impactExpand your portfolioBuild on your skill setNetworking opportunitiesReceive strong references What's involved?Design a print-ready brochure template in a high-resolution format (jpeg, pdf, etc.)Create collateral, to be used in conjunction with the Brochure Writing project, for new marketing materialsHonour the deadline and give reasonable notice if this is not possible.Note: This project does not include printing- we will do this on our end! What is the time commitment?This role is completely flexible- you can give as much or as little time as you like, as long as both booklets are completed by 16th May 2026. What support will you be given?Ongoing support and regular catch-ups with the Volunteer CoordinatorOpportunities to be involved in other Haemochromatosis UK activities Can you help us? Get in touch!