Support for Conferences and Workshops
Organising conferences and workshops in your country can be a great way to bring people together to share information and build support networks. We have supported many events over the years and we have done this in a variety of ways from providing speakers and advice to providing financial support. If you would like to hear about future conference grants do check the website or get in touch.
Please find below some recent examples of conferences we have supported.
In 2021 this IPWSO project will be supported by
Romania, November 2019
In November, Dr. Susanne Blichfeldt travelled to Bucharest on behalf of IPWSO to speak to families at a conference organised there. She presented on nutrition, development, neurology and behaviour and general medical issues. She also conducted several 30-minute sessions one-to-one with family groups, sharing her knowledge and experience.
Vietnam, October 2019
Georgina Loughnan (Board member), Constanze Lämmer (paediatrician and nutritionist) and Norbert Hödebeck-Stuntebeck (Chair of our Professional Providers and Caregivers Board) visited Hanoi, Vietnam, to present a Prader-Willi syndrome programme at the request of Do Thuy Lan, a psychiatrist who established the Morning Star Centre for children with disabilities and who won a scholarship to attend our Caregivers conference in Munich in 2018.
The first day was attended by about 80 professionals, including a paediatric endocrinologist and a geneticist, and many of the Morning Sun staff. The second day was attended by about 36 parents and 30 Morning Star staff members. We met with Dang Trung Tam, the president of the PWS Vietnam Network or “club” and many keen parents. Lantz Yap, from the Malaysian PWS Association joined the Sunday programme. The Vietnamese PWS Network includes 60 families. All children known to the network are under 16 years of age.
The content of the two days focused on physical, social, cognitive and emotional characteristics of PWS. This was the basis for the more individual and specific questions and answers from professionals and parents. Afterwards the participants felt very well informed and reported they had a better perspective on the future care of their children and the professionals who worked with them.
The situation in Vietnam for people with PWS needs development. Children may attend a facility, such as the Morning Star if their parents can afford the costs, but otherwise stay at home. There are no “special needs” schools in Vietnam. Lan reported that The Morning Star costs are much lower than most centres in Vietnam, and she adjusts the fees for those who are very poor. She receives no government funding, but her son-in-law has encouraged a group of his friends to sponsor some of the children to attend.
The children receive the therapies they require and life-skills training, such as dressing themselves and housework such as making the bed and cooking. The training rooms are small and closed in, but the children receive a high ratio of staff support, including one-to-one for sensory and speech therapy. Growth Hormone is available in Vietnam but at a cost for the families.
Bulgaria, March 2019
IPWSO expert Dr Susanne Blichfeldt was contacted by Dr Nikolinka Yordanova from Bulgaria, regarding a visit to Varna to attend a conference of families and professionals. We had already received some questions about two children with PWS there and were interested to follow this up. With the support of IPWSO, Susanne attended the meeting and played a major role in the event.
Dr Blichfeldt was asked to give presentations with a focus on food and nutrition and neurology for an audience consisting of parents and professionals. Parents of children with PWS were also invited for an afternoon session and individual consultations with some of the families were facilitated. For many parents it was the first time they had met other families affected by PWS
It is now possible to perform genetic testing for PWS in Bulgaria, all children can have growth hormone for free, but sleep studies are difficult to perform. Children are offered special education in school, and many have physiotherapy, the youngest in some cases have this every day, and for free. For adults with PWS the situation is difficult. There are no PWS homes, so most people stay at home with their parents. Some people can go to day centres with other people with disabilities, but a big problem is that there is little or no support for the control of food. Management of difficult behaviour, also related to food, is a problem.
In Varna, the hospital for children is also a centre for rare diseases and endocrinological problems and Professor Iotova and Dr Yordanova have developed a specialism in PWS. They inform other doctors in the hospital, have translated many articles from the IPWSO website into Bulgarian and they try to communicate about PWS to other hospitals in Bulgaria.
Colombia, March 2019
In 2019 IPWSO and Friends of IPWSO (USA) gave financial support to the development of a conference held in Bogotá to discuss behavioural and metabolic disorders. Organised by the Colombian Prader-Willi Syndrome Association in partnership with other local bodies, the event was attended by 500 delegates from Colombia, Chile, Guatemala, Panama and the USA and attracted international speakers from the USA, Spain and Chile as well as speakers from a wide range of professional backgrounds from Colombia.
Delegates came from the health, education and rehabilitation sectors and many associated professions. The conference helped the Colombian association to reach new families as well as professionals who will now work with them to support their activities.
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 Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.