11th International Prader-Willi Syndrome Conference Organisation Terms and Conditions
Terms and Conditions
The 11th International Prader-Willi Syndrome Organisation Conference, “The Conference” will be held from 6 – 10 July 2022 as in in-person event in Limerick, Ireland. The Conference is organised by IPWSO and co-hosted with the Prader-Willi Syndrome Association Ireland (PWSAI).
COVID-19
While the emergence of COVID-19 has made planning for in person events challenging, it is hoped that it will still be possible to hold the Conference in person on the dates originally agreed. Provision is made in these Terms and Conditions should this not be the case.
In order to keep everyone safe at the event, IPWSO strongly advocate that all delegates are vaccinated before travelling. Whilst we know that decisions regarding the COVID-19 vaccination will be a personal/family decision we will be following the guidance provided by the Irish Government and public health authorities, current details of which can be found here. IPWSO will be bound by these requirements and any requirements set out by the University of Limerick in relation to COVID-19 safety measures. IPWSO and PWSAI may also decide to impose additional COVID-19 safety measures; these may include mandatory vaccination for Conference delegates, or the provision of a negative COVID-19 test. IPWSO and PWSAI will monitor and, if necessary, amend our guidance as things progress over the next year.
If either IPWSO or PWSAI concludes that, due to COVID-19 or other reasons, the Conference cannot safely proceed, then the event will be cancelled or postponed.
1. Registration
1.1 Registration for the Conference is online using the IPWSO website. After providing details for the purposes of registering delegates will be transferred to the Payment Processor site to enter credit or debit card details and finalise the payment. IPWSO uses ‘Stripe’, a leading internet payment service provider.
1.2 If after registering a delegate can no longer attend and wishes to make a substitution, email conference@ipwso.org as soon as possible. Substitutions shall not be accepted after 30 June.
1.3 All registrations to the Conference are made subject to these Terms and Conditions (which shall apply to the exclusion of any other terms).
2. Payment
2.1 Payments for the most part shall be made by credit or debit card and in EURO using ‘Stripe’. IPWSO may invoice individuals or organisations directly such as in the case of block bookings when payments may be made by bank transfer. IPWSO cannot accept cheques, credit notes or cash payments.
Refunds
3.1 All cancellations and refund requests must be made in writing by sending an email to conference@ipwso.org no later than 10 June. Cancellations received after 17:00 (UK time) on this day will not be refunded.
3.2 Refunds will incur an administration fee except in the case where a delegate is unable to travel to Ireland due to quarantine or travel restrictions in their country.
3.3 Cancellations received on or before 1 January 2022 will be refunded minus a €25 charge.
3.4 Cancellations received between 2 January 2022 and 10 June 2022 will be refunded minus €85.
4. Alterations and Cancellations
4.1 IPWSO reserves the right, at any time and for any reason to make alterations or cancellations to the Conference programme, speakers and date and timings.
4.2 In the event that the Conference is cancelled by IPWSO, all delegates will be entitled to a full refund. IPWSO’s liability in this instance will be limited to the total registration fee paid.
4.3 In the event that it is necessary for IPWSO to postpone the Conference or change the dates of the Conference, the delegate’s registration shall remain in force and will be subject to the refund policy set out above. If IPWSO postpones the Conference and the alternative dates no longer suit the delegate, IPWSO will refund the delegate in full.
4.4 In the event that a delegate is unable to travel to Ireland due to quarantine or travel restrictions in their country, IPWSO will refund the registration fee in full.
IPWSO shall not be liable for any loss, damage or expenses incurred by delegates (including but not limited to any wasted costs and expenses or other fees), howsoever arising whether direct or indirect.
Events Outside Our Control
5.1 To the fullest extent permitted by law IPWSO will not be held responsible for any delay or failure to comply with our obligations under these conditions if such delay or failure arises from any causes which is beyond our reasonable control including reasons of Force Majeure which shall include any default due to an act of God, war, threatened war, act of terrorism or threatened terrorism, lock out, individual action, fire, flood, drought, tempest or other event beyond our reasonable control. This provision does not affect your statutory rights.
5.2 In such circumstances, IPWSO shall be entitled to a reasonable extension of time for performing its obligations under these Terms and Conditions. If the period of delay or non-performance continues for 45 days or more, IPWSO may terminate this Agreement at its sole discretion by giving notice in writing to the delegate.
Liability
6.1 Any liability that IPWSO may have to a delegate pursuant to contract, tort (including negligence) or otherwise, for any damages, loss, costs, claims or expenses of any kind howsoever arising, whether arising out of or in connection with any registration (or request for registration) made by the delegate or on their behalf in relation to the Conference, shall be limited to the total registration fee paid by the delegate.
6.2 Nothing in these Terms and Conditions limits any liability which cannot legally be limited, including but not limited to liability for
- a) death or personal injury caused by negligence, and
- b) fraud or fraudulent misrepresentation.
Delegate Insurance
Delegates are advised to ensure they have adequate personal, travel, health, and cancellation insurance. Upon registration participants agree that the Conference Organisers do not assume any liability for these matters either during the Conference or for any time that delegates spend in Ireland.
Accommodation
Delegates are responsible for booking their accommodation directly with hotels and/or the University of Limerick. IPWSO has no liability in this regard.
Programme Content
The presentations, documents and materials published or otherwise given or made available as part of the Conference do not necessarily reflect the views or opinions of IPWSO. Whilst IPWSO takes reasonable care to ensure that the content created by it is accurate and complete, delegates should verify the accuracy of any information as supplied as part of or in connection with the Conference (whether provided by IPWSO, any speakers at the Conference or by third parties) before relying on it.
Recordings and Photography
By taking part in this Conference delegates grant the organisers full rights to use the images resulting from the photography/video filming and any reproductions or adaptions of the images for fundraising, publicity, or other purposes in furtherance to the aims of IPWSO and PWSAI. This might include (but is not limited to), the right to use in our printed and online publicity, social media, press releases and funding applications. If a delegate does not wish to be photographed, email conference@ipwso.org or contact an event organiser during the Conference.
11. Severability
Each of the paragraphs and sub-paragraphs of these Terms and Conditions operates separately. If any Court or relevant authority decides that any of them are unlawful, the remaining paragraphs and sub-paragraphs will remain in full force and effect.
Data Protection
The contact details of registered delegates will be held by IPWSO in accordance with IPWSO’s privacy policy, details of which may be found on our website https://ipwso.org/privacy-policy-2/. Please note that if you register to attend the Conference you are agreeing to us contacting you to keep you informed of any important updates specifically relating to the Conference. We will also include your details on our general mailing list. You can opt out of the general mailing list by unsubscribing at any time.
Code of conduct/Health and Safety/Parking
All delegates and guests attending Conference are required to comply with the code of conduct and policies set out by IPWSO and the University of Limerick for the duration of the Conference.
In relation to conduct, IPWSO reserves the right to exclude anyone from the Conference, who in its sole opinion conducts themselves in a manner which may be offensive to others. IPWSO will seek redress for any financial damage caused by any individual in such circumstances.
In relation to Health and Safety please refer to the University of Limerick’s Health and Safety Essentials Booklet and Statement, copies of which can be found at http://www.ul.ie/hr/health-safety-ul, and https://www.ul.ie/hr/ul-safety-statement. The University of Limerick may from time to time, test evacuation alarms and procedures and delegates and guests attending the conference are requested to comply with the guidelines in each residential apartment/house or University of Limerick venue in respect of this.
In relation to parking, vehicles parking in unauthorised spaces, (e.g., outside of designated spaces, on campus roads or vehicles causing obstructions to other vehicles, emergency access routes, emergency exit doors or footpaths) may be clamped or removed.
Only vehicles displaying (on front windscreen) a valid University of Limerick parking permit may park in staff car parks. Any other vehicle, with the exception of a vehicle displaying an EU recognised disabled drivers permit (parked in a disabled driver’s space), is liable to be clamped. Parking spaces, where defined are laid out so as to provide safe entry, exit, circulation around and manoeuvring within car parks. Please note that if you are staying in a residential on campus village, designated car parking is provided either on or adjacent to the relevant site.
Safeguarding children and vulnerable adults while at the Conference
IPWSO wants to ensure that children and vulnerable adults are protected from harm whilst attending the Conference. To this end all children and vulnerable adults must be always accompanied by a responsible adult, including throughout specific Conference programmes designed for children with PWS and adults with PWS (SUAS). A copy of the University of Limerick’s safeguarding policy can be found here.
Entire Agreement
These Terms and Conditions contain the entire agreement between IPWSO and delegates, replacing all previous agreements in respect of the Conference. Delegates agree that they have not relied upon any pre-contractual statement made by IPWSO in entering these Terms and Conditions. In this context, pre-contractual statement means any undertaking, promise, assurance, statement, representation, warranty or understanding (whether in writing or not) of any person relating to the Conference (other than as set out in these Terms and Conditions).
Governing Law and Jurisdiction
These Terms and Conditions shall be governed by and construed in accordance with English Law and the parties agree to submit any disputes arising out of these Terms and Conditions to the exclusive jurisdiction of the Courts of England and Wales.
Contact Details
If you have any queries in relation to your booking of this Conference or these Terms and Conditions, please contact conference@ipwso.org
International Community
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
Paediatric Association of Nigeria - 57th Annual Scientific Conference
IPWSO was proud to support a dedicated PWS symposium at the 57th Annual Scientific Conference of the Paediatric Association of Nigeria (PAN) Conference held 21-23 January 2026 in Ogun State.
Famcare Board Member, Dr Elizabeth Oyenusi, presented on the clinical features, diagnosis, and management of PWS, while Dr Oluwakemi Ashubu shared the first genetically confirmed case of PWS in the country - an important milestone. The session attracted over 104 delegates and sparked a lively discussion.
IPWSO also hosted an exhbition table throughout the 3-day conference, distributing educational materials and engaging directly with healthcare professionals.
We are hugely grateful to Dr Oyenusi, Dr Ashubu and Dr Oladipo (Senior Registrar) for their support in making this educational oureach possible - helping to strengthen awareness and improve early diagnosis of PWS in Nigeria. Funding for this event was kindly provided by Friends of IPWSO (USA).
Global Newborn Society Inaugural Conference, Sweden
The Global Newborn Society’s 1st Conference took place in Uppsala and Stockholm, Sweden, from 2-4 November 2025, marking an exciting milestone for the organisation’s international community.
We were delighted that Dr Susanne Blichfeldt was invited to deliver a plenary lecture on behalf of IPWSO, titled “Neonatal Hypotonia: Clinical Features Seen in PWS That Can Help Differentiate It from Other Congenital Disorders with Similar Symptoms.”
The inaugural event brought together a diverse audience of physicians, nurses, and social care leaders from around the world. The programme was wide-ranging and stimulating, featuring cutting-edge discussions on newborn health, early diagnosis, and innovative care practices - setting a strong foundation for future collaboration within this growing global network.
ASPED 2025, Dubai, UAE
The 6th conference of the Arab Society for Paediatric Endocrinology and Diabetes was held in Dubai over two days on the 26th and 27th September 2025. IPWSO was invited to be a partner and to present at a session on PWS. The conference was attended by over 400 paediatric endocrinologists from more than 20 countries in the Middle East and North Africa. Charlotte Hoybye and Tony Holland attended and presented on behalf of IPWSO and Dr Sarah Ehtisham described her experience seeing patients with PWS in the United Arab Emirates. IPWSO hosted a stand for the whole conference.
In conversation many attendees reported seeing people with PWS and described the challenges they faced, particularly with the management of behaviour problems. Some felt nervous about starting growth hormone as they had had no experience prescribing it to infants with PWS.
Approximately 100 attendees joined the IPWSO mailing list and attendees were very keen to gain knowledge about PWS. Numerous memory sticks with information on PWS and printed material in English and Arabic were taken. Some attendees talked about establishing national or regional PWS Associations.
This was an extremely positive experience and hopefully attending this meeting has laid the groundwork for IPWSO to engage more fully in the Region in the future. We were very well looked after, and the organisers were excellent hosts.
EPNS 2025, Munich, Germany
Together with parents and representatives from the Prader-Willi-Syndrom Vereinigung Deutschland, we were proud to host a PWS exhibition stand at the 16th Congress of the European Paediatric Neurology Society, held in Munich from 8-14 July 2025. The event welcomed over 2,000 medical professionals from around the world.
We had the pleasure of engaging with attendees from Türkiye, Iraq, Palestine, Croatia, Moldova, the Philippines, Ukraine, North Macedonia, Kazakhstan, Armenia, and many local specialists.
Dr. Stefani Didt, Gesellschafter at Katholische Jugendfürsorge der Diözese Augsburg, kindly supported us at the stand and provided expert responses to clinical enquiries. We hope these international connections will contribute to raising awareness about IPWSO’s work, particularly in improving access to genetic testing in underserved regions.
We also highlighted the new treatment for hyperphagia and shared our recent publication, "Improving Mental Health and Well-being for People with PWS."
Sincere thanks to our colleagues from PWS Vereinigung Deutschland and to Dr. Didt for their invaluable support.
ESPE-ESE 2025, Copenhagen, Denmark
IPWSO was honoured to participate in the recent Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE), held in Copenhagen from 10–13 May 2025. This important event provided an invaluable opportunity to raise awareness of Prader-Willi syndrome (PWS) among a broad international medical audience.
IPWSO was represented by our CEO, Margaret Walker, along with Dr Charlotte Höybye from Sweden and Dr. Susanne Blichfeldt from Denmark—both esteemed members of IPWSO’s Clinical and Scientific Advisory Board.
Dr Blichfeldt noted that this congress is a major event in the clinical academic calendar and has a particular significance as it marks the first-ever joint meeting of these two prominent societies. Despite its European designation, the congress attracted participants from around the globe, including delegates from the Middle East, Africa, the United States, Japan, Australia, and New Zealand.
IPWSO’s educational booth was strategically positioned within the Patient Advisory Group area dedicated to rare disease organisations. As part of the programme, we were invited to deliver a 30-minute presentation during the Patient Voices Session. Dr Charlotte Höybye and Dr Susanne Blichfeldt presented on Prader-Willi syndrome (PWS), with a focus on genetics, endocrinology, and clinical manifestations. Our presentation, along with many others, was recorded and is now available on demand via the ESPE-ESE congress platform.
PWS was prominently featured throughout the congress. In a session on the transition of care for patients with rare diseases, Dr. Maithé Tauber (Toulouse, France) discussed the specific challenges associated with the transition period in PWS. She emphasized the need for multidisciplinary care and ongoing specialist follow-up in adulthood through dedicated PWS clinics.
Another session addressed medical and clinical management in both children and adults with PWS, again highlighting the critical importance of a smooth transition from paediatric to adult care and the role of specialised clinics. The session included an in-depth discussion on hyperphagia in PWS, exploring its profound impact on individuals and their families. Management strategies were reviewed, and a new medication, Vykat, was presented as a potential treatment for hyperphagia.
In addition, there was a strong presence of scientific posters on PWS from various countries, covering a wide range of topics such as hormonal therapies, genetic findings, ageing, and guidance for families. A total of 33 posters focused on PWS, reflecting a growing global interest and commitment to advancing knowledge and care in this area.
We were greatly encouraged by the high level of engagement and the visibility given to PWS throughout the congress. This increased awareness brings hope that more children will be diagnosed earlier and receive appropriate, specialised medical care from childhood through to adulthood.
ASPAE 2025, Abidjan, Côte d’Ivoire
After Yaounde (Cameroon 2023) and Alger (Algeria 2024), IPWSO was pleased to be present at the 16th Annual Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE), at the invitation of Dr Kouamé Hervé Miconda, Programme Co-organiser. Prior to the main conference, IPWSO, in partnership with Dr Micondo, organised a dedicated PWS workshop which attracted 60 professionals - paediatricians, endocrinologists, doctors, students, nurses, and midwives.
MENA 2025 Abu Dhabi, UAE
The Middle East and North African (MENA) conference for Rare Diseases was held in Abu Dhabi, United Arab Emirates, between 17th and 20th April 2025. Tony Holland represented IPWSO at this meeting and presented a poster about our work. The conference was attended by clinicians, genetic councillors, scientists, and other health disciplines from across North Africa and the Middle East. The conference was in English as many clinicians in this part of the world are from elsewhere and not Arabic speakers. The conference was of a very high standard and ranged broadly across many rare genetically determined conditions as well as there also being discussions about how to develop services and how to seek approval for new treatments. Our poster was one of five that was selected as the best posters exhibited at the meeting. Tony said, "My experience of the conference was very positive and I am sure there are opportunities that can be built on. Being part of the endocrinology meeting, which is likely to be attended by endocrinologists from across the whole region, provides a wonderful opportunity to engage more fully with clinicians most likely to see people with PWS".
Kenya Paediatric Association Annual Scientific Conference, Monbassa, Kenya
Dr Menbere Kahssay and Dr Renson Mukhwana, Aga Khan University Hospital, Nairobi represented the Kenyan team and, together with Drs Constanze Laemmer and Dr Charlotte Höybye, managed the IPWSO educational booth at our first meeting in this region.
A dedicated session on PWS significantly raised awareness and knowledge about the syndrome among paediatricians and allied health professionals.
Dr Kahssay said, "We were able to have track and plenary session and four days interaction with the participants at the booth.
The PWS session focused on case experiences and regional differences in PWS management. Thanks to IPWSO’s support, Drs Charlotte Hoybye and Constanze Lammer joined as expert speakers, sharing their valuable experiences in managing PWS across the neonatal, childhood, and adult stages".
Dr Menbere Kahssay and Dr Renson Mukhwana presented genetically confirmed local cases, highlighting diagnostic challenges and treatment approaches.
Third Biennial Rare Diseases Conference, Rare X, Johannesburg, South Africa
Karin Clarke and Molelekeng Sethuntsa organised the IPWSO exhibition table at this event in Johannesburg from 14-17 February 2024. Molelekeng attended the conference and reported on the excellent discussions that focused on the challenges of early diagnosis, especially in Africa, centres of excellence, and ways that the Department of Health, WHO and RDI can improve detection and treatment of rare diseases.
6th RARE Summit 2023, Cambridge, UK
Tony Holland, President, and Agnes Hoctor, Communications and Membership Manager, represented IPWSO at the 6th RARE Summit organised by Cambridge Rare Disease Network on 12 October, 2023.
MetaECHO® 2023, Global Conference, Albuquerque, New Mexico
The 5th MetaECHO® Global Conference took place from September 18-21 in Albuquerque, New Mexico. It celebrated 20 years of ECHO programmes and brought together ECHO leaders, partner teams, government officials, funders, policy makers, and industry experts to share retrospective work and thoughts on the future of ECHO. Our President, Tony Holland, presented a paper on “A Global ECHO Programme for the Rare Disorder – PWS", based on IPWSO’s Project ECHO programme.
EPNS 2023, Prague, Czech Republic
The 15th European Paediatric Neurology Society Congress (EPNS) took place from 20-24 June. Tünde Liplin, PWS Hungary, and Hana Verichová, PWS Czechia, represented IPWSO. Twenty-two people from countries including Georgia, Israel, Lithuania, Turkey, Italy, Slovakia, Romania, Netherlands, Bosnia Herzegovina, Belgium, Argentina, Norway, Serbia, India, and Australia subscribed to the "Stay in touch with IPWSO!" contact list. Tünde reported that many people came to the stand just to inquire and chat, the majority of whom were hearing about IPWSO and our work for the first time.
ECE 2023, Istanbul, Turkey
The European Congress of Endocrinology (ECE) took place from 13-16 May. We hosted an information table and were represented by IPWSO advisers, Constanze Lämmer and Charlotte Höybye, and also our Communications and Membership Manager, Agnes Hoctor. We were pleased to be given the opportunity to present on IPWSO and PWS at the Hub Session. The most exciting and important element for us was that the Turkish location meant that delegates came from many countries in Middle East as well as Europe.
ASPAE 2023, Yaoundé, Cameroon
We hosted an educational booth and presented at the round table on Obesity at this important Endocrinology conference hosted by the African Society of Paediatric and Adolescent Endocrinology (ASPAE) from 9-10 February. Read our blog about our visit.
ECE 2021, Online
We hosted an educational booth and gave a presentation at the European Congress of Endocrinology in May 2021.
ESPE 2019, Vienna, Austria
We exhibited at the European Society of Paediatric Endocrinology (ESPE) Conference in Vienna, Austria, which took place in September 2019. Find out more in our blog.
ECE 2019, Lyon, France
We exhibited at the European Congress of Endocrinology in May 2019.
Dr Ashubu discussing IPWSO's educational materials with delegates at our booth.
IPWSO was honoured to be invited to present at the Global Newborn Society's Inaugural Conference.
Dr Sarah Ehtisham presenting at ASPED 2025 followed by a panel discussion.
Colleagues from PWS Vereinigung Deutschland help manage our PWS stand at EPNS 2025. Many thanks to all the parents and carers for their invaluable support!
Dr Charlotte Höybye (Sweden) and Dr. Susanne Blichfeldt (Denmark) presenting at the ESPE-ESE Patient Voices Session - May 2025
Dr Blichfeldt and Margaret Walker (CEO) managing our IPWSO educational booth.
François Besnier, IPWSO's Vice President, meeting some of our travel fellowship delegates at ASPAE 2025.
IPWSO's poster achieves top award!
Many thanks to Drs Constanze Laemmer, Menbere Kahssay, Charlotte Höybye and Renson Mukwana for all their support at KPA 2025.