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I-DSD/CAH user group meeting

Office for Rare Conditions, Glasgow

Wednesday, 26 September 2018 from 17:00 to 20:30 (EEST)

I-DSD/CAH user group meeting

Ticket Information

Ticket Type Remaining Sales End Price Fee Quantity
I-DSD/CAH user group meeting 85 Tickets 31 Aug 2018 Free £0.00
Group Dinner (deposit)
There is a dinner after the meeting at a restaurant within a short walk of the venue. A deposit is required and the balance payable at the restaurant on the night. Please note the dinner is limited to 40 places, on a first come first served basis, but a waitlist is available.
37 Tickets 31 Jul 2018 £10.00 £0.00

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Event Details

Meeting of the I-DSD/CAH registry users group

 

The meeting is free to attend and will be followed by a dinner within a short walk of the venue

Participants should arrange their own travel and accommodation.

The final programme is now available on the meeting website

 

Venue: Agia Sofia Children’s Hospital – Amphitheatre, Athens

Time

Topic

Speaker

1700

Start

 

1715

Welcome

Anna Nordenstrom

Chair

Anna Nordenstrom & Nils Krone

 

Successful outputs (process and results) (8 mins and 2 mins questions)

1730-1740

Trends in Sex Assignment

Zosia Kolesinska

1740-1750

Outcome in PAIS

Angela Lucas-Herald

1750-1800

Birth Weight in Different Etiologies of DSD

Sukran Poyrazoglu

1800-1810

Fludrocortisone & Salt in Young Children with CAH

Uta Neumann

Ongoing studies (process and results) (8 mins and 2 mins questions)

1810-1820

Assessing the Value of I-CAH Registry for Pharmacovigilance

John Porter

1820-1830

Outcome in 45X/46XY

Marie Lindhart Johansen

1830-1840

Growth Patterns in XY DSD with SGA

Martine Cools

1840-1850

Identifying Novel Forms of AIS

Nadine Hornig

1850-1900

Outcome in Girls with PAIS

Guilherme Guaragna

1900-1930

Break

 

1900-1910

Parent Reported Outcomes In CAH & DSD

Salma Ali

1910-1920

Genetics of DSD Associated with CV Abnormalities

Ken McElreavey

1920-1930

Trends in Gonadectomy in DSD

Angela Lucas Herald

2000-2020

Future Developments

Streamlining– Optimizing Data Support Collection (10 min – 10 min)

Membership of I-DSD/ I-CAH, written information

Jillian Bryce, Faisal Ahmed

2020-2030

Open Discussion, AOB

 

2030

Finish

 

 

Meal after meeting – tbc (a short walk from the venue)

Do you have questions about I-DSD/CAH user group meeting? Contact Office for Rare Conditions, Glasgow

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When & Where


Agia Sofia Children's Hospital Amphitheatre
Thivon 1, Athina 115 27
115 27 Athens
Greece

Wednesday, 26 September 2018 from 17:00 to 20:30 (EEST)


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Organiser

Office for Rare Conditions, Glasgow

The Office for Rare Conditions, based at the Royal Hospital for Children and the University of Glasgow, aims to promote the awareness and management of rare health conditions in children.

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