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NEWS AND UPDATES

GROUP MEETING SATURDAY 21st MAY 2016

GETTING THE REPLACEMENT DOSE OF GLUCOCORTICOID RIGHT

We are holding a meeting at the Institute of Child Health, Guildford Street London, on Saturday 21 May 2016, starting at 12:45 pm. We have one of the top UK Barristers speaking about disability and discrimination and she will be available to answer questions. We have had a lot of questions pertaining to this subject from many of our parents and young adults, especially with regards to taking time off work for appointments, whether you need to declare having an adrenal problem when seeking employment as well as giving medications at school etc. We also have an adult speaker who will be talking about her experiences in dealing with her condition and how after attending one of our previous meetings and taking on board all our information on dosing, has improved her quality of life! Professor Peter Hindmarsh will be explaining how hydrocortisone works in the body as cortisol and how to avoid the common short and long term side-effects that have been highlighted in our extensive survey of those on replacement glucocorticoid therapy.

Please note that we have set up a dedicated e-mail address for booking seats so please send your e-mails to: cahisusbookings@yahoo.com .Please could you give the first name and surname of who is attending as well as the condition you are associated with such as CAH, Adrenal Hypoplasia, Addison’s etc.

The meeting is free to attend. Unfortunately due to the venue layout no children under the age of 10 are permitted. Early booking is advised as seating is limited.

Please click on the link below for the full programme and map.

PROGRAMME MEETING 21st MAY 2016

GROUP MEETING SATURDAY 14TH JUNE 2014 WORKING TOWARDS A SINGLE GOLD STANDARD CARE PROTOCOL FOR ALL (INCLUDING ADULT CARE) WITH ADRENAL INSUFFICIENCY

GROUP MEETING SATURDAY 14TH MARCH 2015

WORKING TOWARDS A SINGLE GOLD STANDARD CARE PROTOCOL FOR CHILDREN AND ADULTS WITH ADRENAL INSUFFICIENCY

UCLH & GOSH CAH Parent and Patient Support Group are hosting a follow on meeting to the one held in June 2014. We have some excellent data on the side effects from the questionnaire that was undertaken and plan to explore the reasons why so many people experience side effects. We believe we can offer some advice in helping to prevent some of these occurring. If you missed the meeting this year, you are still very welcome to attend however early booking advised as places are limited. Unfortunately due to the venue layout, no children under the age of 10 permitted. Bookings can be made through cahisus@yahoo.com send an e-mail with names of those coming along and which condition you are associated with.

To see the full programme, click on the link below

MEETING 14 MARCH 2015 PROGRAMME

GROUP MEETING SATURDAY 14TH JUNE 2014 WORKING TOWARDS A SINGLE GOLD STANDARD CARE PROTOCOL FOR ALL (INCLUDING ADULT CARE) WITH ADRENAL INSUFFICIENCY

UCLH & GOSH CAH Parent and Patient Support Group are hosting a meeting along with the Addison’s Group and Pituitary Foundation, for all on cortisol replacement. Early booking advised as places are limited. Unfortunately due to the venue layout, no children under the age of 10 permitted. Bookings can be made through cahisus@yahoo.com , Addison’s Organisation and The Pituitary Foundation.

PROGRAMME & VENUE 14 JUNE 2014

PARENT AND PATIENT GROUP MEETING SATURDAY 9TH NOVEMBER 2013

Please click on the Programme and Venue link below for full details of our meeting planned for Saturday 9th November 2013 to be held at the Leolin Price Lecture Theatre, Institute of Child Health, 30 Guilford Street. London WC1N 1EH.

As you will see we have a full programme with some very interesting topics. We are very grateful to our speakers for giving up their time to come and talk and of course to all of you who support us by coming along.

We have a Solicitor speaking on the subject of Disability and Discrimination. This is extremely important to all and we hope this will go some way to help youngsters both at school and in the work place.

PROGRAMME & VENUE

PARENT AND PATIENT GROUP MEETING SATURDAY 27TH April 2013

Please click on the Programme and Venue link below for full details of our meeting planned for Saturday 27th April 2013 to be held at the Leolin Price Lecture Theatre, Institute of Child Health, 30 Guilford Street. London WC1N 1EH.

Our team will be available to answer any questions during tea break and look forward to chatting to you. See our Facebook page for more details as we will have Sport Bands for sale, Ampsnaps available and several ‘pumps’ on display.

PROGRAMME & VENUE

PARENT AND PATIENT GROUP MEETING 28 APRIL 2012

Please click on the Programme and Venue link below for full details of our meeting planned for Saturday 28th April 2012 to be held at Weston House, Great Ormond Street, London.

We will be covering some very interesting topics which are centred on your feedback. We have set aside time on the agenda for any questions or discussions you may like to have. We also will be demonstrating using and issuing Ampsnaps to add to your emergency kits, these make snapping open ampoules not only easier but much safer.

Our team will also be available to answer any questions during tea break and look forward to chatting to you. We look forward to seeing you all!

PARENT AND PATIENT GROUP MEETING SATURDAY 20TH OCTOBER 2012

Please click on the Programme and Venue link below for full details of our meeting planned for Saturday 20th October 2012 to be held at the Leolin Price Lecture Theatre, Institute of Child Health, 30 Guilford Street. London WC1N 1EH.

Our team will also be available to answer any questions during tea break and look forward to chatting to you. We look forward to seeing you all!

PROGRAMME & VENUE

PARENT AND PATIENT GROUP MEETING 28 APRIL 2012

Please click on the Programme and Venue link below for full details of our meeting planned for Saturday 28th April 2012 to be held at Weston House, Great Ormond Street, London.

We will be covering some very interesting topics which are centred on your feedback. We have set aside time on the agenda for any questions or discussions you may like to have. We also will be demonstrating using and issuing Ampsnaps to add to your emergency kits, these make snapping open ampoules not only easier but much safer.

Our team will also be available to answer any questions during tea break and look forward to chatting to you. We look forward to seeing you all!

PROGRAMME & VENUE

GREAT ORMOND STREET HOSPITAL (GOSH) WEBSITE

GOSH have recently revamped their website and our clinic leaflets are now available for download directly from their website.

http://www.gosh.nhs.uk/medical-conditions/clinical-specialties/endocrinology-information-for-parents-and-visitors/conditions-we-treat/congenital-adrenal-hyperplasia/?locale=en

 

EMERGENCY IDENTITY CARDS

GOSH and University College Hospital now have a new steroid information/identity card for all patients who are cortisol deficient. These are available in clinic or can be downloaded from the Great Ormond Street website (navigate to the Congenital Adrenal Hyperplasia page, select Emergency Care and you will find the cortisol replacement therapy card there).  All patients are encouraged to use these cards as they provide both hospitals contact numbers for emergencies, as well as instructions for the emergency services and staff at A & E departments.

THE PUMP

The pump has been accepted for use in the British Police Force and we are very proud that one of our CAH patients, who is using the pump method for replacing cortisol, has been accepted into the Force.

 

Please note that any data/ information contained on this website cannot be copied or used in any way without the prior permission of the owner/ author Professor Peter Hindmarsh