The impact of a small parental network
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How the European Chromosome 11q Network improved research, knowledge, contacts and support. Presentation workshop Expert Centres for ultra rare diseases, Eurordis Conference,15. May 2010, Krakov, ...

How the European Chromosome 11q Network improved research, knowledge, contacts and support. Presentation workshop Expert Centres for ultra rare diseases, Eurordis Conference,15. May 2010, Krakov, Poland

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The impact of a small parental network Presentation Transcript

  • 1. The impact of a small parental network
    How 11q improved research, knowledge, contacts and support
    Annet van BetuwFormer president of the EuropeanChromosome 11q Network
  • 2. Content presentation
    At start
    Goals
    Outcomes
    Howdid we do it
    Future
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    2
  • 3. 11q: at start
    History
    Setting of the goal
    Planning
    Communication
    Implicationsnetwork on personallife
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    3
  • 4. Setting of a goal
    Goals 11q:
    Finding and supportingpersonswith a very rare disorder on the long arm of chromosome 11
    Exchanginginformation and experiences
    Beinganeffective research base for ‘our’ scientists to obtainvalid research results
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    4
  • 5. Wow, even more goals
    Fightingagainstsocial and medicaldiscrimination
    Organising conferences, reportingaboutit
    Be a model forpeopleaffectedwithother rare syndromesordiseases and to encouragethem: Youcanbesuccessfull as a smallgroup
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    5
  • 6. Possible disorders on 11q
    Terminal deletion: loss of a piece at the end of 11q (JacobsenSyndrome)
    Partialtrisomy: Part of a chromosome is triplicatedinstead of duplicated
    Interstitialdeletion: Loss of a piecewithin the long arm
    Unbalancedtranslocation: A piece of anotherchromosome is attached to chromosome 11 q
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    6
  • 7. Outcomes (1)
    Notbeingaloneanymore
    Conferences
    Research
    • Specializedscientists
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    7
  • 8. Outcomes (2)
    6 international / European meetings
    Severalnationalmeetings
    Contact to othernetworks on rare chromosome disorders / diseases (Eurochromnet, Eurordis) = exchange of experience and cooperation
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    8
  • 9. More outcomes (3)
    Research:
    Jacobsen, severalpublications
    Heart gene, publication
    11q + (ongoing)
    Behaviour/sleepingproblems (ongoing)
    Dysmorphic features (ongoing)
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    9
  • 10. Howdid we do it (1)
    Website
    E-mailing
    Communication = personal contact
    Consequent planning
    Having a team to rely on
    Understanding of private situation
    Finding support fromoutstandingmedical experts
    Having a scientific team to rely on
    Acknowledgement of scientific research
    Activelysupportingmedical experts
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    10
  • 11. Howdid we do it (2)
    Observingourchildrenwell
    Listeningcarefully to personalstories
    Acknowledgement of personalexperience
    Generalizingpersonalexperience
    Bringing parental knowledge and experienceintoscientificarena
    Parentsstaying in control of the network
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    11
  • 12. Importance of meeting
    Conferences: content based on personalquestions
    Organisation: based on knowledge and experience of parents
    Givingspace to meet
    Givingspace to discuss
    Inviting speakers whowilladjusttheirknowledge to whatnetworkneeds
    Children and families first, next step is research
    Cooperation in research on strictagreement
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    12
  • 13. Having a look at the future
    Lessfundingfor research?
    Stillhardlyany research for ultra ultra rare chromosomal disorders?
    Need to meet continues, more and more countries in Europejoin. Is a smallnetworkstillable to handle?
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    13
  • 14. Web 2.0 ? Web 3.0 ?
    11q startedinthe ‘web 1.0’ era: sending
    Web 2.0 is aboutsharing, conversation
    Whatwill web 2.0 bring? And web 3.o?
    Social media likeFacebookonlysuccesfullthroughactivemastering
    New possibilities: E-health and online consulting
    Is a smallnetworkable to handlethis? Role of Eurordis?
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    14
  • 15. Thankyou
    Eurordis, Krakow, 15 May 2010 - Annet van Betuw
    15