Mandy Aldwin-Easton Medical and Communications Manager Expand I'm one of the original co-founders of the Ichthyosis Support Group (ISG) and I have Netherton syndrome. I have literally grown as an adult being part of the ISG, and in April 2024 I stepped down from being a Trustee, to become an employee in the role of Medical and Communications Manager. I’m one of the original co-founders of the Ichthyosis Support Group, and to this day, I live and breathe this charity — not just because of the work I do, but because I have ichthyosis myself. For me, this isn’t just a job; it’s a vocation and a way of life. My favourite parts of the role are raising awareness and educating healthcare professionals. One of my proudest moments was being invited to speak at the British Association of Dermatologists Annual Conference in 2024. I was honoured to share the stage with my own dermatologist, Professor Jemima Mellerio — a world expert in ichthyosis — who I invited to co-present with me. Together, we delivered a presentation to more than 700 delegates, and the response was overwhelmingly positive. It was a career highlight. Another incredible moment came when Professor Mellerio nominated me for a Dermatology Quality In Care Patient Choice Award - which I was deeply humbled to win by public vote. My role is diverse and ever-evolving. I provide support, guidance, and information to individuals and families affected by ichthyosis, staying up to date with the latest in research, treatments, and best practice. I work closely with medical professionals and specialists to ensure our members receive accurate, relevant, and timely information. I also facilitate peer support through networks and forums, helping people connect and share their experiences. Communication is a major part of what I do. I manage our website, social media channels, newsletters, and print materials — always aiming to respond sensitively and promptly to enquiries. I also develop educational resources like factsheets and webinars to raise awareness and ensure that both the public and healthcare professionals are better informed about ichthyosis. Working with other charities, advocacy groups, and stakeholders helps amplify our message and strengthen our voice. Event planning is another key aspect of my work — from webinars and workshops to national conferences and awareness campaigns. I oversee everything from logistics and speaker coordination to promotion and evaluation, ensuring each event is meaningful, inclusive, and impactful. I’m also responsible for fundraising, developing strategies that keep our charity sustainable. I identify potential funding sources, build relationships with donors and sponsors, and organise fundraising events to support our work. Beyond my role at ISG, I also serve as President of the European Network for Ichthyosis (eni) — an international organisation that brings together individuals and families affected by ichthyosis, alongside healthcare professionals, researchers, and advocates from across Europe. Our goal is to improve lives by sharing knowledge, promoting research, and advocating for better healthcare services for those living with ichthyosis. Current eni members include the UK and Ireland, Netherlands, Spain, France, Germany, Italy, Norway, Belgium, Finland, Denmark, Portugal, and Sweden. If you run a patient organisation or are an advocate for ichthyosis in your country and would like to join the network, I’d love to hear from you. Please get in touch at [email protected] or visit https://ichthyosis.info.
Michelle Anthony Expand Michelle Anthony Operations & Marketing Manager Hi, I’m Michelle Anthony. I joined the Ichthyosis Support Group with a passion for making a meaningful difference in the lives of individuals and families affected by ichthyosis. With a background in community work, family support, and communications, my focus has always been on creating inclusive spaces where people feel heard, understood, and empowered. Before joining ISG, I worked in marketing roles across the charity, education, NHS, and private sectors. My experience includes developing strategic campaigns, managing digital content, and helping organisations expand their reach and visibility. I’ve also been actively involved in business networking, which has allowed me to build strong partnerships, foster collaborations, and connect with professionals across multiple sectors to support shared goals. My work has equipped me with the tools to build awareness, drive engagement, and ensure key messages reach the right audiences. Whether supporting a health initiative within the NHS, raising awareness in the education space, or working with private sector partners, I’ve always focused on creating meaningful, accessible communication that makes a difference. Being part of ISG gives me the opportunity to combine my professional experience with a cause I care deeply about—raising awareness of ichthyosis and improving the lives of those living with it across the UK and Ireland.