Preparing for the future: When parents die
There are many practical and emotional reasons to plan for the future when you are the parent of a person with PWS. Thinking about the future, and all the issues that need to be addressed, is very complex and requires very well planned and detailed logistics. We will all be absent from our children’s lives at times due to illness, travel, work or respite, but also finally, when we die.
If, from the beginning, we can organise periodic breaks for our children and leave them in the care of others, it can be a way of training and preparing them to accept life without us. Depending on local circumstances, the person with PWS may move to a group home as an adult and already be building a life that is less reliant on us as they grow older.
A way to help prepare ourselves (and the wider family) is to ask the following questions. Although we must accept that we can never be completely prepared for every eventuality.
We can ask ourselves:
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- Who is going to take care of the person with PWS?
- Where will they live?
- How will their health needs be managed and paid for?
- What income will they live on?
- Who will be in charge of managing their income or any assets that we leave them?
- Who is going to tell them of our death?
- Do we want them to attend our funeral?
- Who is going to ensure that our provisions are complied with?
As each of these questions is answered, others will arise, for example thinking about the person we want to look after them:
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- Is the person who is going to take care of them trained, or do they need some training?
- Is that person aware of our decision and do they accept it?
- If that person for some reason can’t take on this responsibility, then who else could do it?
Depending on the answers to these questions, we will need to develop a plan and think carefully about its execution.
Developing a plan
As parents we prepare our children to be as independent, autonomous and functional as is possible for someone living with PWS, in all aspects of life. We prepare our children for their adulthood by developing good habits, being polite, taking care of their own hygiene, cleaning, tidying etc., but they will always need some support in their life, and we need to plan for when we are not with them. To prepare them involves gradually including other people into their lives so that the changes will not be too sudden and difficult for the person with PWS to accept.
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- Does the person with PWS have relatives who might want to play a role in their care that goes beyond their existing relationship? Look for opportunities to talk about this issue and talk through any concerns and questions.
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- If that is not the right option in your family, then who is going to take care of the person and their needs? Where will the person live? What options are available so that we can leave our children in the best possible care?
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- Is it appropriate to talk to the person with PWS about this situation? How can we do it without generating more anxiety than they already experience due to their syndrome? At what time in life should these conversations happen?
As caring parents, these are questions which need to be thought about from childhood and not wait until our old age or in the worst case, to leave the problem to others.
A parent writes (From a parent of an older child)
I think when someone else dies who we know, then that is a good time to talk with the person with PWS, because it is something they are currently aware of. We can ask questions like, “Who would you like to take care of you or support you if I pass away? But of course, this won’t be just yet”. Just gently open the door to the idea that everyone dies sooner or later. I am lucky in that my daughter is in a residential home, where I know she will be cared for when I die. If it is possible, arrange for your son or daughter to spend as much time as possible in the company of people who will look after them when you die, so that the transition is slightly easier.
A brother writes:
Losing your parents is undeniably one of the most challenging and heartbreaking experiences life throws at you. As a brother of a person with Prader-Willi syndrome, I find myself grappling with the immense void left by their absence. Not only must we endure the pain of losing our beloved parents, but we are also entrusted with the responsibility of continuing to care for our sibling with PWS. This duty goes far beyond merely understanding their temperaments and routines; it necessitates a comprehensive understanding of their unique needs and unwavering support.
When a relative or other person takes on the role of primary carer
Preparing to shoulder this role requires more than just being familiar with the person with PWS’s daily life. The new carer needs the invaluable knowledge and guidance that the parents can provide. Parents hold crucial information about the person’s medical insurance, healthcare providers, specialists, medications, schedules, and educational or workplace support. The new carer must be well-versed in their nutritional plans, allergies, clinical history, and any relevant financial and legal arrangements. Gathering this information together to pass on allows the new carer to step into the parents’ shoes and take on the responsibility of providing the best possible care for the person with PWS.
Documenting and organising essential information about the person’s care, from medical details to educational plans, is vital. Storing this information securely, such as in the cloud, with access given to relevant parties, ensures that it remains accessible and never lost.
It is also important to consider the practical supports that the new carer may need. Will they be able to afford to support the person with PWS? Will taking on the support role require them to give up their paid employment? Is their accommodation large enough to accommodate another person? What are the legal and financial aspects of taking on this role that you need to be aware of in your country? There may also be legal issues around mental capacity and decision-making that you need to be aware of.
In addition to practical considerations, the emotional toll of losing one’s parents or a close relative, and then also assuming this new role, cannot be overlooked. New family carers must learn to navigate their own grief while being a source of strength for the person with PWS. Communicating the concept of loss to the person with PWS requires sensitivity and understanding. Equally important is recognising that one cannot do this alone. A person must seek support from other family members, friends, and professionals who can help shoulder the weight of responsibility and advocate for the person with PWS’s needs and happiness.
As your family embarks on this journey, let us remember that love and understanding will be your guide. We must strive to establish consistency and reliability in the person with PWS’s life, familiarising the wider family and other carers with the person’s needs, spending quality time together, and showing unwavering support. With patience, education, and a commitment to the person’s well-being, we can navigate the intricate path of caring for a person with Prader-Willi syndrome after the passing of their parents.
This article was written by IPWSO’s Famcare Board.
2023
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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.