How did Rob get involved?

Rob was diagnosed with genetic haemochromatosis in 2016 after two years of significantly high ferritin levels and related symptoms. After doing some research about the condition, he discovered Haemochromatosis UK. He became a member in August of that year. 

During the first lockdown of the Covid 19 pandemic, Rob was classed as clinically vulnerable and was unable to work for quite some time. Subsequently, he found himself with lots of time on his hands, which prompted him to turn his hand to volunteering. This was an easy decision for Rob, as he felt Haemochromatosis UK had been a ‘Beacon of Hope’ for him since his diagnosis, and he felt he wanted to give something back.

What's involved as a volunteer?

For a while, Rob provided admin support for the Helpline Volunteers, before eventually becoming a Facebook Moderator for our Haemochromatosis UK Facebook Support Group. Rob told me he'd noticed a few red flags from people who joined the group disingenuously, which spurred him on to become a moderator, helping to safeguard existing members of the group. 

To date, the Facebook Group has just under 12,000 members, so taking on the responsibility of being a moderator is no easy feat! Rob told me that he felt pleased with how he and his fellow volunteers work together to keep the group a safe and happy place for members. 

After several years of volunteering as a Facebook Moderator, Rob was asked to support in training new volunteers in moderating. He provides detailed training over Zoom to groups of 4-6 and helps to guide new volunteers through the onboarding process. 

What have been the memorable moments?

Rob told me that one memorable moment for him since becoming a volunteer was meeting  Stephen McGann (one of Haemochromatosis UK’s Patrons) at an event in 2022. He told me he and his wife were big fans of ‘Call the Midwife’, so it was very exciting to meet him! 

What are the benefits of volunteering with Haemochromatosis UK?

Rob told me that volunteering had helped him build his confidence over the years. “I’m more outgoing- it’s helped bring me out of my shell”. He’s proud of how far he has come since his diagnosis marvelling, “leading a training group for 6 other people - I could never have done that 10 years ago”. 

“It fits in well with my life,” Rob explained, telling me that he has found the right balance between his volunteering and day-to-day responsibilities. He enjoys helping to create a safe, welcoming online community for those affected by Haemochromatosis. 

Rob tells me he gets on well with his fellow volunteers. Although the HUK volunteers are spread out far and wide across the UK, Rob tells me that they all try to keep in touch with one another as much as they can, and it is always a pleasure to get to meet in face to face at events when the opportunity arises.