2018 Year of the Guidelines

Pitt-Hopkins Syndrome is a rare syndrome that has only recently been possible to diagnose, thanks to chromosomal research. Knowledge about the syndrome as well as the approach to future care is at a very early stage. Many families and professionals are leading the search for new information. During the search it is important for them to share their knowledge and experiences. By bringing all the information together, a foundation can be laid which gives the benefit of knowing what works and what does not.  We have noticed during family days, weekends and other activities that many parents meet and exchange extra information with the professionals which is useful for both parties. The meeting of families with PTHS children is therefore central to the congress.  The most knowledgeable experts are the parents. Together we know more!

During the congress various experts will be available to answer questions around their specialism and will be happy to listen to personal experiences of someone in a family with a PTHS child.

From the experiences during consultation with doctors, during conversations with fellow contacts, and from patient questionnaires we saw certain reoccurring themes  

  • care of children with PTHS
  • care of adults with PTHS
  • the senses (e.g. sensory integration, visual problems)
  • respiration
  • gastrointestinal problems
  • neurological and orthopaedic problems
  • behaviour
  • communication


Since 2017, a team of international experts - under the inspired leadership of Prof. Dr. Raoul Hennekam, - have been collecting and describing the available information regarding the above topics and transforming the information into the so-called Guidelines. In Spring 2018, the draft version will be shared at the congress. This is an important moment. Through mutual conversations between families and professionals, feedback and meeting the children and their parents, the Guidelines will be improved and expanded to ensure that the knowledge of all parents is incorporated into the Guidelines.

The congress offers a varied program. In addition to lectures and 1-on-1 contacts with experts, there are activities for families and children with or without PTHS Visit the North Sea together and relax at the beach! A perfect moment to chat with other attendees in a casual atmosphere where you can support and learn from each other!

For your information; all presentations will be given in English. Doctors or other willing people can explain the presentations in case you have problems with understanding.


To welcome you as a parent with a child, a child-friendly environment, volunteer carers and a special programme will be provided for you and any accompanying siblings so that you can concentrate on the sessions. Naturally you will be responsible for the care of your child during the Congress, but you will not be alone! 

The program will gradually be further developed by the Dutch PTHS Foundation in the coming months; So check this website regularly!


An important aspect of the congress is to facilitate the continuous sharing of knowledge. The Waihonapedia project is an exciting global solution. On Sunday, the project team, led by Gerrit-Jan Koekoek will give a presentation.

Information and activities

At the congress, there will be information areas about the above mentioned themes with materials to learn about and try (e.g. snooezelene materials, communication aids, tools). Experts will be present who can explain more about the different subjects. Also there will be suitable activity areas. 


  • Meeting families with a PTHS child, exchanging experiences
  • Thinking and contributing to the establishment of the Guidelines 
  • Individual consultations
  •  Workshops on communication / behaviour
  • A beautiful location, easily reachable by public transport, all in one place, close to the sea, offering a Welcome Reception, delicious lunches, dinner, coffee and tea.


For who? 

Families with a child with PTHS, paediatricians, behavioural scientists, group leaders doctors and other interested therapists.



  • €100 / weekend for adults/carers/family of PTHS-child (contribution to catering costs during the weekend)
  • Children free
  • € 125 / day Doctors / therapists


  • Unlimited coffee / tea / water / soft drinks, lunches (2x), dinners (Friday/Saturday)
  • Airport transfer to the hotel and back.
  • Responsible guidance / care for your child
  • A special program for siblings
  • And plenty of time and space for getting to know each other!!


  • overnight accommodation

The cost of a 2 person hotel room (incl. breakfast) € 99 per night. Third bed in the room € 35, -. Single room € 84, per night.


For organizational reasons and because it would otherwise be too busy for the people with PTHS (because of their stimulus sensitivity) it was decided to open the registration for the congress ONLY FOR PARENTS of children with PTHS and / or interested people (without child).

After your registration we will sent you a questionnair by which you can inform us with how many people you will be, the number of children, how many rooms you wish to reserve, what facilities you need, whether you have dietary wishes etc etc. Based on that, we will make reservations in the hotel for you and only then you will receive a final confirmation of your registration and an invoice.

Highlighted comments

  • Nancy LeGendre says:

    I am interested in knowing when the consultations may happen. Any updates on the program schedule are greatly appreciated. Thanks.

  • Anke Peters says:

    We are already looking forward to welcoming you at our joint conference! And we are curious about your expectations for this weekend. Share them here with us; We will try to meet as much as possible of everyone's wishes / expectations.


Van der Valk Hotel Sassenheim-Leiden

Warmonderweg 8
2171 AH Sassenheim-Leiden
The Netherlands

Contact person

deCongresbalie - Anke Peters


  • Parent / carers / family of PTHS-child per weekend: € 100

  • Doctor-therapist / per day: € 125