expertise centrum Cornelia de Lange syndroom
welcome
at the expertise centrum Cornelia de Lange syndroom
hidden
Our goal
The Cornelia de Lange Syndrome expertise centre is there for all people with Cornelia de Lange syndrome and their families and/or carers. As a centre of expertise, we combine our knowledge of the syndrome and support and advise patients, their families and their treating physicians.
Team
Developmental and Genetic Pediatrician and clinician-scientist
MD PhD
Dr. Sylvia Huisman
Klinisch Geneticus
Drs. Saskia Maas
Orthopedagoog /
Dr. Paul Mulder
What we do
| Clinical centre | |
|---|---|
| 1 | Availability of a specialized multidisciplinary approach to patients in a specific for the decease clinic in a medical facility |
| 2 | Evidence for a strong knowledge base of decease |
| 3 | Commitment to furthering clinical knowledge of decease ideally in a collaborative way |
| 4 | Dissemination of new clinical information of decease either via national and/or international meetings or publications |
| 5 | Having received funding for decease-relevant specific areas |
| Research Centre | |
| 6 | Research which provides a significant contribution towards understanding the science behind the decease |
| 7 | Evidence for a strong knowledge base of the decease |
| 8 | Commitment to furthering scientific knowledge of the decease ideally in a collaborative way |
| 9 | Having received funding for decease-relevant research |
| 10 | Dissemination of new scientific findings related to decease via (inter)national meetings, publications or significant contributions |
Practical
Make an appointment
The consultation hours of the expertise centre take place on every 2nd and 4th Tuesday afternoon of the month. If you would like to make an appointment for the consultation hour, please send an e-mail. You can send the referral letter from your doctor, for example the general practitioner or another specialist, with this e-mail. You can also indicate on which Tuesdays you could visit the outpatient clinic in the coming months. When planning your appointment, we will take your preferred day(s) into account as much as possible.Bring along
We ask you to bring the following with you when visiting the clinic:
Appointment confirmation.
AUMC patient card and appointment card, if you already have one.
Valid insurance card the person with Cornelia de Lange syndrome.
Identity card of the person with Cornelia de Lange syndrome and yourself (passport, driving licence, identity card or * tourist card).
Growth data information of the consultation bureau, if available.
List of medication and specially adapted aids, if applicable.
Familiar toys for your child, if desired.
Letters about your child written by other doctors, if you have them.
Costs
Visits to the expertise clinic are generally reimbursed by your health insurer (when you are a resident of The Netherlands). We ask you to contact your insurer prior to your appointment to ask whether your visit to an expertisepoli is indeed reimbursed. If this is not the case, we would like to ask you to mail us this prior to your appointment.
Contact
expertise centrum Cornelia de Lange syndroom
( waihonapedia.centreExpertise.view.partof Amsterdam Expertise centrum Ontwikkelingsstoornissen (AECO) )
Polikliniek Kindergeneeskunde, bouwdeel A0, wachtkamer 2
Meiwerfdreef 9
Postbus 22660
1100 DD Amsterdam
Nederland
NETHERLANDS
By phone: 020 566 8000
