Summit on Global access to therapies
Global Access to Therapies for People with Prader-Willi Syndrome: Understanding the Challenges and Seeking Solutions
Wednesday 13 November, 2024
To achieve Universal Health Coverage, all people must have equitable access to medicines and therapies. Yet we know that people with rare diseases living in low and middle income countries are frequently unable to access medicines and therapies that are taken for granted elsewhere.
IPWSO’s Summit Meeting explored this issue with the help of two presenters.
Alexandra Heumber Perry, CEO of Rare Diseases International, presented on Access to Therapies for Rare Disorders in Low and Middle Income Countries. This presentation considers challenges relating to equitable access and describe some successful initiatives aimed at expanding access.
Tony Holland, President of IPWSO, presented early data from the recent IPWSO Study of the Global Availability of Growth Hormone Treatment for People with Prader-Willi Syndrome. This presentation shed light on the access challenges experienced by people with PWS in particular.
Please note this meeting is now concluded. Videos of the presentations can be viewed below.
A PDF of Alexandra’s presentation can be viewed here.
A PDF of Tony’s presentation can be viewed here.
About our speakers
Alexandra Heumber Perry is the Chief Executive Officer of Rare Diseases International, the global alliance of Persons Living with a Rare Disease. She has dedicated her entire career to contribute improving healthcare policies to benefit people living with diseases, with a particular focus in neglected and vulnerable people. She has over 20 years’ experience in global health with demonstrated capabilities in patient advocacy and multi-stakeholder partnership. As CEO of RDI, Alexandra sets the strategic direction, drives the organization’s goals of raising awareness of rare diseases, improving access to diagnostics, treatments and care, advocating for the rights of patients around the world and representing its members and enhancing their capacities to ultimately improve lives of Persons Living with a Rare Disease.
Tony Holland is a UK-based psychiatrist whose research interests include the eating, behavioural and mental health problems associated with having Prader-Willi syndrome. With colleagues he has published extensively on these topics in academic and practice-based journals. Since 2016 he has been President of IPWSO.
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What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
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