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Addison's Disease Self-Help Group News Alert

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26 June 2018

ADSHG News Alert

Welcome to the summer 2018 edition of the Addison's Disease Self-Help Group News Alert, with news, views and events from the ADSHG.
 
You can read our full summer newsletter in the Publications centre of the ADSHG website. Packed full with personal stories, drug updates and news of our members' achievements, it is well worth a read. You can also read of people's personal experiences in the members' only Living Well section on our website (you need to be logged into the website to view this).
Read full ADSHG newsletter

Medical lecture and AGM

 

The ADSHG’s medical lecture and AGM takes place in London this Saturday, 30 June 2018, 1.45-4.45pm. Dr Robert Murray, Honorary Associate Professor at Leeds Teaching Hospitals NHS Trust will speak about findings from a long-term EU-AIR study on quality of life in adrenal patients on steroid therapy. 

Afternoon tea and the chance to practice your injection technique after the lecture, at around 3.45pm. Map and directions to the venue on this link.

Lunch bookings have now closed, but the ground floor café has a range of salads and hot meals available. Sorry, only food purchased on the premises can be eaten in the centre. 

Fire regulations mean there is a limit of 140 places at the medical lecture itself so advance booking is advisable; please reserve your seat and afternoon tea in the online Shop here. £5 per person or £10 per family.

There will be two special interest satellite sessions ahead of the lunch from 11:30 – 12:30, supported by an endocrine nurse. This is a chance to chat and share experiences with others about:

You can check details of this event in the online calendar. We look forward to seeing you there.

Enjoy the EHIC while it lasts

 

Travel insurance prices are likely to rise from 10% – 20% once Britain leaves the European Union, a Brexit report from the House of Lords has concluded. This is because British citizens will lose their current access to free emergency medical care across the 28 member states of the European Union through the European health Insurance card (EHIC). You can read more in this article. Until then, you can apply for an EHIC through NHS Business Services.

New British hydrocortisone supplier

 

A West London generic drug producer, Genesis Pharmaceuticals, has launched a new 10mg hydrocortisone tablet. More details in this article.

Contribute to research about living with Addison's

 

Please take a few minutes to complete our ADSHG survey on living with adrenal conditions. It takes 10-15 minutes, and the insights you offer could help others in future. So far, over 600 ADSHG members have responded, representing around one-third of the charity’s total membership. Help us to take that total higher and contribute your experiences about living with an adrenal condition.

News from Addison's Ireland
 
Rachel Bracken has taken over from Linda Grealy as coordinator for Addison's Ireland. In the June newsletter she shares some promising news about work with the Addison’s Ireland clinical panel. Rachel is also looking for new volunteers willing to help arrange this autumn’s meeting for Addison’s Ireland, preferably in the Dublin/Leinster area, as you can read on this link.
Run for Addison's
 
ADSHG still has 1 charity place in the Great South Run, along Portsmouth’s sea front on 21 October 2018. If you would like to raise funds and awareness, please get in touch at donations@addisons.org.uk
Travel and holidays
 
This issue has an extensive travel section, opening with a page of tips and reminders about how to prepare and pack for your holiday. Written jointly by endocrine nurse consultant Nikki Kieffer  from Leicester Royal Infirmary and ADSHG’s clinical advisory panel coordinator Katherine White, this checklist should allow you to relax and enjoy your trip, knowing that you have prepared for just about anything. Following this, Angela explains how she survived an unexpected car accident in Lanzarote, and AnnMaria describes what happened when she developed an allergic reaction to an unidentified insect sting on Corfu. To wrap up the travel feature, university student Connor describes a memorable holiday hiking through the deserts of Utah and Arizona last summer, and his future plans for seeing the world with Addison’s.
Special General Meeting and medical seminar
 
ADSHG is hosting a medical seminar and Special General Meeting in Glasgow on Sunday 18 November. We are delighted that one of Europe’s leading adrenal specialists, Professor Eystein Husebye from Bergen, Norway, will be available to lead this seminar, ahead of a keynote address to the British Endocrine Societies’ conference the following day. Doors will open at 6pm, in the Buchanan rooms at Premier Inn George Square. 

Details in the members’ calendar on this link. Seat reservations will be available in the ADSHG online Shop from early July. 

More details about the Special General meeting, which will be to propose a new constitution allowing ADSHG to apply for Charitable Incorporated Organisation status, will follow in the autumn newsletter.
Socials
 
Why not join or even host, an ADSHG social? They are a valuable opportunity to make friends, compare experience, and generally enjoy companionship. ADSHG meetings are planned for Glasgow, Ripon (Yorks), Mellor (Lancs), Corsham (Wilts) and Bridgwater (Somerset) over the summer and autumn. Details in the Socials calendar.

If you can’t find a meeting near you and would like to meet others, please consider hosting a session yourself. Helen Dawson-Smith explains her approach in this article. You can hold it in a public place such as a café, so the task is not onerous, and ADSHG will support you through the whole process. Email socials@addisons.org.uk
Remember, you can read the summer 2018 edition of our full newsletter in the publications centre of the ADSHG website. Log in to receive access to this and to our exclusive members' only Living Well section. 

We value your feedback. Please let us know your thoughts via our forum or by emailing us.

Best wishes
Eilidh McGregor - on behalf of the editorial team
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