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    Membership of the ADSHG is open to anyone with Addison's or other forms of adrenal insufficiency that result in steroid dependence, family members, friends or anyone with an interest adrenal medicine.

     

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Addison’s disease (hypoadrenalism or adrenal insufficiency) is a rare condition where the adrenal glands cease to function and replacement medication is required.

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    We have just migrated our old forum to this one.You should be able to see and post as before, but if you have any issues please follow the below instructions:

     

    1- Find the forum Go to our homepage www.addisonsdisease.org.uk . Click FORUM in the navigation bar. Alternatively bookmark https://forum.addisonsdisease.org.uk/forums/ but ensure you sign in for access!
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    Guest

    Last week, volunteers from Addison's Disease Self-Help Group headed to Birmingham, to the British Society for Paediatric Endocrinology & Diabetes (BSPED) annual conference.  Our aim in attended was to raise awareness of Addison's Disease amongst the medical fraternity and to participate in related symposium discussions. 

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    The BSPED aims to improve the care of children and young people with endocrine disorders and diabetes mellitus by bringing together professionals from a range of disciplines. The conference in Birmingham brings together clinicians from all over the United Kingdom to share ideas and develop best practice.
     
    Our team of volunteers - Sue Rookes, Sue Partridge & Hilary Close were assisted by ADSHG's CEO, Neil McClements. We ran a display stand for 2 days of the conference. There were many useful discussions with consultants and nurses involved in caring for children & young adults with Addison's. Many medics confessed that they had yet to see a case of Addison's in their own clinics. Several consultants were grateful for our supply of materials for their clinics - both for patients and as training aids for their junior doctors.
     
    We also enjoyed participating in the symposiums, putting the patient's voice across to a medical community who were keen to listen to our perspective. On the final day of the conference, our CEO met with members of the BSPED Executive Committee to explore our shared mission in helping people affected by Addison's. Following this successful introduction, we hope over the coming year to work together with BSPED members to help them with their medical research and to provide expert patient feedback to endocrinologists working in this area.
     
    Thanks to Sue, Sue & Hilary, everyone left the stand with a bundle of our literature, leaflets, posters and other educational materials to take home and spread the word.
     
    Our thanks to our three amazing volunteers - Sue, Sue and Hilary - and also to BSPED's Executive Committee for facilitating our attendance and providing the stand, at what was a very successful event.



    ADSHG

    We’re proud to have been selected as a charity partner of the London Landmarks Half Marathon on Sunday 24th March 2019. We have 8 places available for people willing to run and fundraise for Addison’s Disease Self-Help Group. Do you fancy taking part? Know a friend, family member or neighbour who’s quick on their feet? Well, this could be right up their street!

    The half marathon starts on Pall Mall and winds its way around some of the most iconic sights of the capital. All the roads will be closed as over 13,000 runners pound their way around a course that takes in St Paul’s Cathedral, Bank of England, The Gherkin, Tower of London and back along the Embankment past the London Eye to the finish line outside Downing Street.
     
    If you are (or know) a runner that would like to fundraise for us, signup here.
     
    Every Addison’s runner will get free entry to the race, an ADSHG T-Shirt plus a box of ADSHG fundraising swag. For the fastest overall time in our team, we’ll also be awarding a special prize – one for ladies and one for men. And there’ll be an extra special prize for the person who raises the most money for our charity by the end of April.
     
    So, what are you waiting for? Get involved!
     
    It’s going to be an amazing day – and everyone can get involved! And you don’t have to be able to run, to help….
     
    We’ll be assembling a group of ADSHG supporters to cheer on our team, raise awareness with spectators and raise some funds on the day. So if you fancy a day out to cheer on our team & make some new friends just come along – we’d love to see you there! Just save the date - Sunday 24th March 2019 in Central London.


    ADSHG

    The Society for Endocrinology invited the Addison's Disease Self-Help Group to their annual meeting Glasgow on 19th-21st November 2018 to help raise awareness of adrenal insufficiency amongst clinicians.

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    ADSHG headed north of the border to Glasgow earlier this month to the Society for Endocrinology's annual three-day conference.
     
    Over 1000 clinicians were in attendance at the Glasgow SECC, one of the UK's largest gatherings of the endocrine medical community. Our amazing volunteers (including Alison, Anna, Jennifer, Noel and our founder and patron Deana Kenward MBE) worked flat-out to raise awareness amongst doctors and endocrine nurses on adrenal insufficiency. By the end of the conference, only a few ADSHG publications, posters and leaflets remained - a testament to the success of the event in ensuring Addison's Disease is well recognised and understood by medics.
     
    During the conference, we were also delighted to award the Annette Louise Seal Memorial Award to Chona Feliciano, Senior Clinical Nurse Specialist at University Hospitals Birmingham NHS Foundation Trust. Chona had initiated a study to better understand the Hypothalamic-Pituitary Adrenal axis recovery rate of patients with Glucocorticoid-Induced Adrenal Insufficiency (GC-induced AI). Thanking our charity after the event, Chona said "I am honoured and humbled by this award". Her winning abstract was published at the conference for all attendees to learn from - we are thrilled to support Chona's research with this bursary.
     
    Commenting on the success of the event, ADSHG's new Chief Executive, Neil McClements said :
     
    "It's vital that our Addison's community actively engages with the endocrinology medical community, to raise awareness and develop our shared understanding of this rare disease. It's been wonderful to meet key members of the endocrine community at their main conference of the year. We've been overwhelmed with offers of support and collaboration from the medical community, which we will be progressing during 2019."
     
    He continued :
     
    "I would particularly like to recognise the wonderful efforts of our volunteers - Alison, Jennifer, Anna, Noel, Deana, Stewart, Linda, Bernadette & Terri  - who put on such a informative display and patiently answered a seemingly unending number of questions from attendees. They worked tirelessly throughout the conference to raise awareness of Addison's  - we simply couldn't have done it without them!"
     
    Our thanks to the Society for Endocrinology for graciously funding our exhibition stand and travel expenses for our volunteers to attend.


    ADSHG

    The autumn edition of the ADSHG newsletter is now available in the Publication centre and  members can download it here...

    This new-look issue is, as always, packed full with news on medication, ambulance awareness, members' experiences, fundraising events and social meetings. With Christmas fast approaching, there is also timely advice on how to reduce psychological stress.
     
    This issue of the newsletter also contains the 2018 Christmas catalogue order form, highlighting items and special offers available to purchase from our online Shop.
     
    Download the September 2018 issue of the ADSHG newsletter and the Christmas catalogue order form here.
     
    We would love to hear your feedback and views on the new look newsletter via the forum topic & poll here...

    ADSHG

    Membership of Addison's Ireland is open to anyone in Northern or Southern Ireland with Addison's or other forms of adrenal insufficiency that result in steroid dependence. Family members, friends or anyone with an interest in adrenal medicine are also welcome. You can join as an e-member receiving your material electronically through the website or as a postal member.

    Aims of the Addison's Ireland
    Addison's Ireland focuses on health-related issues specific to the Republic of Ireland, where the health services and other state supports differ from the UK, and aims to encourage greater medical awareness of our needs within the Irish health care system and supported by the Addison's Ireland Clinical Advisory Panel (AICAP).
     
    Joining Addison's Ireland
    Please join the ADSHG in the usual way and those based in the Northern or Southern Ireland,will automatically become a member of Addison's Ireland too. You can join at any time of year and will receive contact details for the Addison's Ireland Co-ordinator Rachel Bracken when you join the ADSHG.
     
     
    Join the ADSHG.

    ADSHG

    The Scottish Medicines Consortium has approved Alkindi (hydrocortisone granules in capsule form) for restricted use in NHS Scotland. Following a submission by ADSHG, the SMC said "We would like to thank you for the time and effort taken to produce your submission. Capturing the views and experiences of patients and carers is an important part of the SMC process and plays a key role in helping our Committee reach its decisions."

    The SMC has accepted hydrocortisone granules for restricted use for the replacement therapy of adrenal insufficiency. This acceptance is limited to use in infants and young children aged from birth to less than six years old, where the only options to get the right dose are to break up and crush hydrocortisone tablets, produce special solutions or to use hydrocortisone buccal tablets (that dissolve when held between the gum and the cheek) that are not licensed (approved) for treating adrenal insufficiency.
     
    The SMC have published the explanation for their decision, which is available for download from our website here : Decision explained hydrocortisone final.pdf.
     
    Further details are available here : https://www.scottishmedicines.org.uk/medicines-advice/hydrocortisone-alkindi-fullsub-smc2088/
     
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