Lipoedema Support Network Ireland

About Lipoedema Support Network Ireland

Lipoedema Support Network Ireland began in 2023 as a small patient lead support group and has grown into a national community of more than 440+ women. Our purpose is to share understanding, reliable information, and practical guidance so no one in Ireland has to navigate lipoedema alone.

What We Do

Build community: through our structured WhatsApp groups, regional meet-ups, and national events, we create spaces where women support each other, share experiences, and reduce the isolation so often felt with lipoedema.
Share trusted information: te host regular online sessions, expert Q&As, and Instagram Lives shaped by members’ requests and questions.
We have a detailed Support Manual that has become a trusted guide for patients and clinicians.
We navigate healthcare together: as a community, we help each other understand HSE pathways, the Cross Border Directive, documentation, appeals, and the practical steps involved in accessing care.
Strengthen insurance challenges collectively: members share knowledge, templates, experience, and evidence to support each other through insurance claims and appeals, while we collectively engage with insurers for fairer and more consistent decisions.
Advocate for national change: by gathering patient case studies and shared experiences, we are preparing to work with the Department of Health, the HSE, and insurers to push for official recognition and a national treatment pathway.

Our Mission

Empowering women in Ireland living with lipoedema, through compassionate peer support, trusted guidance, and community advocacy, so that no one faces this journey alone.

AnnMarie McGoldrick

Director

AnnMarie’s professional background is in finance, with qualifications in financial advice and as an accounting technician. Her strong organisational skills and experience working in structured, detail-driven environments have naturally shaped the way she supports individuals navigating the complexities of lipoedema care, insurance and treatment pathways.

AnnMarie first suspected something was different about her legs in primary school. Throughout her teens, the heaviness, sensitivity, easy bruising and column-shaped appearance became more pronounced, yet for years she was dismissed or misdiagnosed. When she finally received a diagnosis, she made the difficult decision to travel abroad for surgery — leaving her children, facing language barriers, and managing the process without much support. During her recovery, she searched online for others in Ireland living with lipoedema and helped form an Irish advocacy group. Although that experience came with challenges, it reinforced her belief in the need for a safe, reliable community. In December 2023 she created a WhatsApp support group, which has since grown to over 440 members across Ireland.

Within the organisation, AnnMarie’s role spans communication with the HSE and EU Cross Border Directive teams, networking with advocacy groups, providing one-to-one and group support, guiding members through insurance queries and applications, coordinating events, co-leading fundraising efforts, and helping shape the group’s overall direction.

This work holds deep personal meaning for her. Having faced surgery terrified and alone, AnnMarie is determined that no woman with lipoedema in Ireland will feel unsupported, unheard, or unsure of where to turn. Her goal is to help make lipoedema widely recognised, better understood, and more compassionately treated across the country.

AnnMarie’s journey is powered by her two daughters, her two dogs, and her unwavering ability to look calm while everything around her is on fire.

Aileen Duffy

Director

Aileen is a finance professional with a background in high-growth tech companies. A qualified accountant, she is now part of the leadership team of a global AI tech organisation, helping shape and drive company strategy.

Diagnosed with lipoedema in March 2024 after years of misdiagnoses, Aileen recognises the condition likely began in her teens with early signs including Achilles issues from sports, disproportionate lower-body development and easy bruising. After finally getting diagnosed through her MLD therapist and surgeon, she joined the group and immediately felt supported. Wanting to pay that forward, she’s passionate about raising awareness so young women don’t endure the same journey she did.

Aileen has since undergone three surgeries and is now living her best life including travelling, which includes a bucket list of going to every major global sports event, enjoying time with friends and family, and embracing her inner fashionista!

Stephanie Twohig

Director

Steph is a Senior Project Manager with over 12 years of experience delivering complex initiatives in customer experience and business process outsourcing. Her professional background is defined by her ability to implement large scale change, including mobilising new client accounts and transitioning to new technologies. She brings a strong toolkit of organisational skills, process analysis, strategic planning, and technology implementation, all essential for managing growth and coordinating resources.

Diagnosed with lipoedema in 2024, Steph is acutely aware of the emotional toll of the condition. For over a decade, she wrestled with feelings of frustration and self-consciousness due to the disproportionate body shape that had affected her appearance since her teens. She often felt dismissed or misunderstood by healthcare professionals who misattributed her symptoms to general weight gain. Steph went on to have three surgeries abroad, gaining a clear, firsthand understanding of the significant challenges involved in seeking diagnosis, treatment, and end to end support in Ireland.

After joining the group and experiencing the profound impact of shared information and community, Steph became increasingly involved in awareness efforts, planning, and day-to-day support within the network. Committed to ensuring others don't face the same loneliness and struggle, she now leverages her project management experience to contribute across community coordination, information sharing initiatives, planning for growth, and advocacy work as the Lipoedema Support Network Ireland continues to expand its reach.

Based in Cork, Steph enjoys getting outdoors and exploring new places with her dog, Kevin.

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