WaihonaPedia in ontwikkeling



Als je een kind met een zeldzame aandoening hebt, lijkt het alsof je de enige bent die in die situatie zit. Want zeldzaam brengt met zich mee dat je in je leefomgeving niet gemakkelijk ouders ontmoet met een kind met die aandoening.

In 2015 ontmoetten een drietal ouders van een kind met zeldzame aandoening elkaar in de trein op weg naar een bijeenkomst voor patiëntenorganisaties (PGO's). Zij bedachten hoe fijn het zou zijn als ouders en experts elkaar online zouden kunnen ontmoeten om kennis en ervaringen met elkaar te delen en van elkaar te leren. Zodat de kwaliteit van leven van het kind èn de ouders verbetert en de kennis over de aandoening ook bij artsen toeneemt. 

Die ontmoeting heeft geresulteerd in het platform WaihonaPedia. (Waihona betekent schat in het Hawaïaans en staat voor een schat aan informatie maar ook natuurljk voor het kind dat een bijzondere schat is!) Van 2016-2019 hebben acht patiëntenorganisaties, met subsidie van VWS, samengewerkt om het platform WaihonaPedia te ontwikkelen, uit te proberen en te lanceren.

In 2018 is het team van WaihonaPedia daarom in gesprek gegaan met ouders, experts en andere betrokkenen. Samen hebben we een pad naar de toekomst uitgestippeld. We besloten een duurzame organisatie te starten; de stichting WaihonaPedia. Ook zijn er wensen geuit, meer aangeslotenen en betere toegang. Dat is omgewerkt tot een projectplan. Met overheidssubsidie en bijdragen van de acht betrokken PGO's gaan we nu de stap maken van project naar een duurzame beweging. 

Het platform wordt gebruiksvriendelijker gemaakt zodat ouders gemakkelijker kunnen meedoen. De PGO's gaan aan de slag op WaihonaPedia en ieder kiest daarbij een eigen pad. Sommige starten met het stellen van vragen, anderen het uitwisselen van ervaringen of met vragenlijsten.

We zijn trots dat we kunnen helpen

Wat kun je inmiddels met WaihonaPedia?

'Accessible' information for Cornelia de Lange Syndrome
Throughout many years the community of families and experts has grown by working together globally. The once USA based Ask the expert was converted to WaihonaPedia and available in 8 languages. The principle was that everybody can ask in his/her mother language. The recognized database now contains over 300 'frequently asked questions' that are anonymized versions of over many thousands of questions asked to one of the CdLS communities.
'Accessible' information for the Dutch group for the Williams-Beuren Syndrome
The group, newly founded in 2017, found themselves browsing several sources of information on the internet. It was difficult for families to understand and assess all that information. With WaihonaPedia all information available in Dutch was gathered in one place and organized according to the known topics of the Williams-Beuren syndrome. The information was selected based on accessibility by families.
Use experience knowledge to build a complete picture of the Pitt-Hopkins syndrome
Experts around Pitt-Hopkins syndrome embarked on a mission to build a collective knowledge base for this rare disease. To strengthen this; a world conference was organized in 2018. The knowledge gathered by the experts was presented to families from all over the world. This 'live version' of Ask the expert' was supported by WaihonaPedia so families not able to attend could ask questions and read the questions asked sofar. Also the families returning home were invited to participate in WaihonaPedia to continue asking questions. WaihonaPedia's team ensures that questions are answered by the Expertise centre that coordinates the writing of the guidelines. From the conference > 60 participants signed up. Until today the still growing community around Pitt-Hopkins enjoys the fast responses (80% of the questions are answered within 24 hours). Several participants told us that the answer has helped to make the treatment more tailored to the needs and possibilities of the child.
'Accessible' information based on a scientific publication for Cornelia de Lange Syndrome
Based on years of global collaboration in 2017 a enthusiastic global group of experts (from over 10 countries around the world) embarked on a dream to be the first life-long, rare-disease to publish a scientific consensus statement on Nature Review Genetics. Nature was especially recognizing the family contribution to the experts and family members are added to the list of Authors. WaihonaPedia has then be used to 'convert' this scientific publication to a family version so families can use that knowledge to coach their local care-givers. We are convinced national groups can use these two versions as a stepping stone toward national guidelines.
'Accessible' information based on a national guideline for Marshall-Smith syndrome.
The dutch families of the international Marshall-Smith community worked with the VSOP to publish a national guideline for the Marshall-Smith syndrome. This guideline was 'converted' to a readable booklet for families, including beautiful photos that help to get a positive mindset. This readable booklet was translated in English. With WaihonaPedia and the help of a enthusiastic student the group was able to organize the content around topics. This now allows the families to just focus on the specifics for their personal sitution.
Learn about the diversity of the severity of a disease and offer personalized support
The dutch centre of expertise AECO (AUMC Amsterdam) developed a life-wide set of questionnaires on WaihonaPedia to allow families to make a 'profile' of the situation. This profile is then shared with the centre so they can prepare the expertise for that personal situation. The family can then enjoy a very personal consultation to help them with life-planning.
As an even more interesting effect of this 'profile' is that it will become a family-owned database over life. Already many researchers around the world approach the communities to ask the individual families to share this 'standardized' database. Imagine that we have > 50% of the families that would be willing to share? No need to re-enter the information as it is already there! There is international consensus about that this fact can greatly help building registries for rare diseases. Currently the attempts to build registries are greatly hindered by the fact that there is too little immediate value (What's in it for me) to convince them to make the huge time effort.
Increase awareness with families
A father of a child with Rubinstein-Taybi, an early believer in WaihonaPedia, started with the questionaires. At first he doubted if it was worth the effort. But after completing the questionnaires his quote was inspiring many others; by completing the questionnaires I actually learned about my own son
Asking questions when you have time and inspiration for people around people with dementia
One of our stakeholders; Kansplus, is co-organizing meetings in provinces of The Netherlands to speak with each other about Dementia. These meetings have a format in which an expert introduces a topic and the attendees discuss the matter. These meetings are well known and valued as 'dementia-tables'. But often questions jump to your mind after the meeting. So the idea was raised to use WaihonaPedia for this. The meeting is more or less 'recorded' in text, images and, when needed, video. The questions in the meeting are recorded as well. But when people are back home they can continue to discuss. In this way we could lengthen the meeting virtually. On a national meeting this was demonstrated to all regional coordinators. A sister of somebody with Down-syndrome offered to share her story and we workshopped to play that similar stories were shared and questions asked. The expert was very enthusiastic as this would greatly increase the inputs from real life. It was agreed to start a pilot with WaihonaPedia in 2019.

About the website contents

All of the information contained within this site is for education purposes only. Please contact your doctor to get specific medical advice, diagnoses, and treatment. 

Use of this site is strictly at your own risk. 

WaihonaPedia is a platform where parents and experts share experiences and develop knowledge together. So it is not a knowledge base that is finished: WaihonaPedia is work in progress. 

If you find something that you think needs correction or clarification, please contact us:

team WaihonaPedia

Participants and Partners:

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