IPWSO President, Professor Tony Holland, writes about our international advocacy work and asks for your views…

IPWSO wants to hear from you – how can we best help raise awareness both nationally and internationally about the needs of people with PWS and that of their families?

We have two new initiatives – the IPWSO ECHO® programme  and IPWSO’s engagement with Rare Diseases International, Global Genes and other rare disease organisations.

With guidance from the ECHO® Institute in New Mexico, USA, we have established two ‘ECHO® programmes’ with three more programmes to be started soon. These programmes use zoom technology to develop global communities of expertise and good practice.

Our Leadership ECHO® has brought together mainly family members who have met regularly with the aim of supporting and encouraging each other to develop services in their country – specific topics are discussed and ideas are exchanged.

The second is the Health ECHO® that starts very soon and will bring together clinicians from across the world on a monthly basis to learn from each other and to share ideas about the support and treatment of people with PWS. These two ECHO programmes are in English.

 There will soon be an ECHO® initiative in Spanish primarily for Latin America, and another in English aimed at professional social care providers. As this programme expands and as ECHO® programmes develop in individual countries we are establishing the IPWSO ECHO Academy to provide coordination, guidance, resources and support. Please follow the progress on the ECHO pages of our website.

 The second initiative has been the contribution IPWSO is making to the work of Rare Diseases International (RDI) and specifically the World Health Organisation’s campaign for universal health coverage. In addition to RDI and Global Genes, we are now members of EURORDIS and have applied to join NORD.

 At workshops we have represented the PWS community as an example of one of many rare diseases with specific needs. Recognising that, although rare diseases are rare, as a group of all rare diseases together they are common and many are associated with high levels of need. The WHO is also encouraging the development of centres of excellence for rare diseases across the world.

 These are exciting and important initiatives whether you live in a country with limited or good resources. What more should we do? IPWSO would like to hear from you. We are considering a new initiative focussing on mental health and wellbeing. We repeatedly hear how behaviour problems limit the lives of people with PWS and that of their families. Is this true for you? Are there other priorities? Let us know.

 As always we are grateful for all your support and we certainly look forward to a face-to-face conference in Ireland in 2022. Keep safe.