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IPWSO President Tony Holland talks about the role he has held since 2016 and encourages nominations for his successor in 2025.

IPWSO works on three yearly cycles. The international conference and the IPWSO general assembly happens every three years and the President and other Trustees serve for three years, renewable for a further three years.

I took over as President from Suzanne Cassidy at the international conference in Toronto in 2016 and will, by the time of the conference in Phoenix, Arizona, USA in 2025, have served for nine years. The nine rather than the normal six years came about largely because of the disruption caused by the pandemic.

We now need a new President to continue to take IPWSO forward, expanding our global reach and developing new ways of ensuring that people with PWS and their families receive an accurate and early diagnosis and get the information, treatment and support they need regardless of where they happened to be born and where they live in the world, or whether they are rich or poor.

Why put yourself forward to be President?

The answers are many. First, since it was founded in 1991 as a result of the vision of Jean Phillips-Martinsson and Suzanne Cassidy and later strengthened by the energies of Giorgio Fornasier, Linda Thornton and many others, IPWSO has had an impressive history. It has brought together people with PWS, their families, clinicians, researchers, and care providers from throughout the world helping to establish National Associations and raising awareness.

As reliable genetic testing became available it has ensured that people suspected of having PWS have had access to genetic diagnosis, and it has provided information to families, clinicians and care providers in different languages. This diversity is reflected in the different components that make up our international conference. There is something exhilarating about being a small part of that history.

Secondly, the global community IPWSO represents, together with the resilience, humour and ingenuity of people with PWS and their families from across the world, sometimes struggling with very little support, is remarkable. This community creates friendships and results in a strong sense of common purpose.

The third reason really relates to being a clinician. To put it perhaps rather bluntly – PWS is interesting, people with the syndrome and their families are remarkable in the way they manage the challenges they experience, and we are seeing real advances and the possibility of new interventions and treatments.

IPWSO is at the centre of this world working with its members (National Associations), with the Foundation for Prader-Willi Research, with families, professional care providers, basic scientists, clinicians and clinical researchers, together with academia and pharmaceutical companies.

So why might you want to be President? Well, because IPWSO is special!

Do contact me or Marguerite directly to find out more about the process, eligibility and the timeline, or for an informal discussion about nominating either yourself or someone you know. You can reach us on office@ipwso.org.

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