Mandy is one of the original co-founders of the Ichthyosis Support Group and has Netherton syndrome. She is the Medical and Communications Manager.

This role is diverse and includes the following:

Providing information, guidance, and support to individuals affected by ichthyosis and their families, keeping up to date with the latest developments in ichthyosis research, treatments, and medical advancements. Collaborating with medical professionals and specialists to ensure accurate and up-to-date information is available to members. Facilitating network groups or forums where members can connect, share experiences, and access peer support. Offering advice on managing symptoms, accessing healthcare services, and coping with the psychosocial aspects of the condition.

Managing communication channels such as the organisation's website, social media platforms, newsletters, and other print materials. Responding promptly and sensitively to member enquiries, providing relevant information, resources, and referrals. Creating and disseminating educational materials, factsheets and webinars, to raise awareness and educate about ichthyosis. Developing communication strategies to reach a wider audience, including individuals affected by ichthyosis, healthcare professionals, researchers, and the general public. Collaborating with other charities and organisations, advocacy groups, and stakeholders to amplify the organisation's message and advocacy efforts.

Planning and coordinating events such as webinars, workshops, conferences, and awareness campaigns to engage members and raise public awareness about ichthyosis. Liaising with venues, speakers, sponsors, and volunteers to ensure the smooth running of events. Promoting events through various channels to maximize attendance and participation. Evaluating the success of events and gathering feedback from participants to inform future planning and improvements.

Developing and implementing fundraising strategies to generate revenue for the organization's activities and programs. Identifying potential funding sources, including grants, corporate sponsorships, individual donations, and fundraising events. Cultivating relationships with donors, sponsors, and supporters to secure ongoing financial support.

Overall Mandy's role as the Medical and Communications Manager plays a multifaceted role in supporting individuals affected by ichthyosis, raising awareness about the condition, and ensuring the sustainability of the charity through effective communication and fundraising efforts.

Mandy is also President of the European Network for Ichthyosis.
The European Network for Ichthyosis (eni) is an organisation dedicated to bringing together individuals and families affected by ichthyosis, as well as healthcare professionals, researchers, and advocacy groups across Europe. Its primary goals include providing support and information to those affected by ichthyosis, raising awareness about the condition, promoting research initiatives, and advocating for improved healthcare services and resources for individuals living with ichthyosis. eni facilitates collaboration and knowledge-sharing among its members to enhance understanding, treatment, and quality of life for those affected by ichthyosis in Europe. Current members include UK and Ireland, Netherlands, Spain, France, Germany, Italy, Norway, Belgium, Finland, Denmark, Portugal, Sweden and Denmark Visit
If you run a patient organisation, or are an advocate for ichthyosis in a European country and would like to join eni, please contact [email protected]