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Newsletters (members only)

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Member-only newsletters published quarterly with features and articles about living with Addison's and group news.

60 files

  1. Free

    ADSHG Newsletter 134 - December 2018

    Addison's Disease Self-Help Group Newsletter 134, December 2018
     
    Our latest members' newsletter is available for download. It's 24 pages packed with news, views and advice from the Addison's community - to the Addison's community.
     
    Page 2 : Introduction to the Social Media Team
    A note from the Editor
     
    Page 3 : Hello, my name is...
    Chris Pointon explains how his wife's experiences of palliative care drove this initiative
     
    Page 4 : Introduction to the new CEO
    Message from the Chair, Andrew Glass MBE
     
    Page 5 : Report from the Guest Speaker at the AGM, June 2018
    Professor Rob Murray's talk about EU AIR (EU Adrenal Insufficiency Register)
    Newsletter front covers
     
    Page 6 : View from our treasurer
    An update on our conversion to CIO (Charitable Incorporated Organisation)
     
    Page 7 : Fundraising update - supprt from Google, Iomart and SM&B
    Meet the trustees
    Congratulations to Prof Wiebke Arlt
     
    Page 8 : Emergency injection training
    Julie's ambulance awareness update
    Royal Free patient group
     
    Page 9 : Minutes of SGM, November 2018
     
    Page 10 : Addison's Ireland update
    Press releases
     
    Page 11 : Volunteers wanted
    Medical research grants
     
    Page 12 : Ask the experts
     
    Page 13 : Pump problems
     
    Page 14 : Stories from the Addison's community
     
    Page 15 : Great Scottish Swim
    Adrenaline junkie?
     
    Pages 16 & 17 & 18: Donations & fundraising
     
    Pages 19 & 20 : Event calendar
     
    Page 21 : 2019 subscriptions
     
    Pages 22 & 23 : Spotlight on social media
     
    Page 24 : Back cover
    Christmas card 2019 competition
    Contents and contact details
     

    583 downloads

    Updated

  2. Free

    ADSHG Newsletter 133 – September 2018

    Addison's Disease Self-Help Group newsletter, issue 133, September 2018
     
    Welcome to the autumn 2018 edition of the ADSHG newsletter, with a refreshed, modern design. This new-look edition gives details of the forthcoming Special General Meeting and medical seminar, with messages from our Founder, the new Chair and the Treasurer. This issue also includes information on the prices of generic medicines and updates from ADSHG medical grant recipients. Additionally, Jane Hodgkins offers members helpful advice on how to reduce psychological stress and we report on ambulance awareness, fundraising events and social meetings.
     
    Please note on page 6 of the online newsletter, we have included a clarification note from the Editor that is not available in the print copy: This article was contributed by Phillip Yeoh, who is one of our Trustees. The article should not be taken as medical advice, nor should it be taken as an endorsement by ADSHG for The London Clinic above other medical options open to readers.
     
    This issue of the newsletter also contains the 2018 Christmas catalogue order form insert (included as an extra download file here), highlighting items and special offers available to purchase from our online Shop.
     
    Page 2: Special General Meeting and medical seminar
    Editor's letter
     
    Page 3: Letter from our Founder
    Deana's last column as President
     
    Page 4: Message from the Chair
    ADSHG transformation programme
     
    Page 5: View from our Treasurer
    Introduction to the editorial design team
     
    Pages 6-7: An endocrine nurse specialist’s experience
    Starting a continuous hydrocortisone infusion pump service in my clinic
    Patients’ experience with the hydrocortisone pump
     
    Page 8: Meet the Trustees - Andrew Glass
    Volunteering time to help the ADSHG
    Generic research - give blood
     
    Page 9: Ambulance awareness
    Copycat ambo services - state of flux on ambulance scene
    Participation in the ULTRADIAN study
     
    Page 10: Report on the third joint meeting of Addison’s Disease European Patients’ Organisations
    Call for volunteer speakers
    Renew your Medic Exempt card
     
    Page 11: Coping with psychological stress
    Jane Hodgkin provides advice on how to reduce psychological stress
     
    Pages 12-13: ADSHG grant recipient reports
    Three Award recipients provide an update on their areas of research
     
    Pages 14-16: My perspective - stories from the Addison’s community
    Check that prescription!
    Run, Jennifer. Run!
    A medical emergency and my hospital stay
    An apple a day...
     
    Page 17: IT@ADSHG
    Engagement of IT partner to facilitate core IT support
    Christmas 2018 special offers from the online Shop
     
    Pages 18-19: Fundraising stories
    Cuppa and cake at Caernarfon
    Sam's Fundraiser Day
    Featherstone Kickboxing Club
     
    Pages 20-21: Ask the expert - The prices of generic medicines
    Hydrocortisone prices at last coming down, but we need more help from you
     
    Pages 22-23: Socials@Addisons
    Event calendar
    Social meetings and reports 
    Volunteers needed for endocrine conferences 2018
     
    Page 24: The back page
    Subscription rates 2019
    Reminders 
    ADSHG Trustees, officers and volunteers

    487 downloads

    Updated

  3. Free

    ADSHG Newsletter 135 - Spring 2019

    Welcome to the Spring edition of the ADSHG newsletter. We are exceedingly grateful to all our amazing volunteers who work tirelessly to support and promote the ADSHG. In conjunction with our website and social media platforms our newsletter aims to keep you up-to-date with the latest news and developments from across the Addison’s community.
     
    Behind the scenes the ADSHG has been working hard to gain a better understanding of the challenges members sometimes face in gaining safe, effective care. As a result, we are delighted to introduce new member benefits in this edition and some changes in how the ADSHG operates.

    358 downloads

    Submitted

  4. Free

    ADSHG Newsletter 132 – June 2018

    Addison's Disease Self-Help Group newsletter, issue 132, June 2018
     
    Welcome to the summer 2018 edition of the ADSHG newsletter. This issue has a special travel and holidays feature with lots of helpful tips and reminders for making the most of your holidays, including guidance about the EHIC. Friends and ADSHG members pay tribute to former trustee Sue Chambers, who sadly ended her struggle with leukemia at Easter. Following the introduction of the GDPR in May, learn how we are protecting your data and how you can check and update your accounts details online. Additionally, we report on Addison's Ireland, fundraising events, social meetings and ambulance awareness.
     
    Page 1: High days & holidays
    New British 10mg hydrocortisone supplier
    Run for Addison's in the Great South Run 2018
     
    Page 2: From the President
    AGM and medical lecture
     
    Page 3: Recent news
    A tribute to Sue Chambers
     
    Page 4: Brexit briefing
    Enjoy the EHIC while it lasts
    EMA reassigns all UK contracts
     
    Pages 5-7: Travel and holidays
    Tips & reminders for making the most of the holidays
    Lanzarote swings and roundabouts
    An unexpected sting in Corfu
    Seeing the world with Addison’s
     
    Pages 8-9: Ambulance awareness
    Speaking from the heart - a talk with Liverpool student paramedics
    Bristol student paramedic conference
    Julie’s ambulance awareness update
     
    Page 10: Ireland update
    Working with the Addison's Ireland clinical panel
    Help wanted at the autumn meeting
    Still time to add your voice
     
    Pages 11-13: Around the group
    About the money
    Complete your ADSHG member survey
    Lumpy Lane - a recipe from Sue Chambers
    Wibbly wobbly webby - protecting your data & privacy under GDPR
    How to check your ADSHG account details online
     
    Pages 13-14: Fundraising roundup
    Garstang Gallop
    Fundraising Fridays on social media
    Rare Diseases Day in-store fundraiser
    Twin bake sale
    Phoenix dinner dance
     
    Pages 14-15: Social corner
    A piece of cake - thoughts on getting involved with social meetings
    Social news and reports 
    Social and medical meetings 2018
     
    Page 16: The back page
    Reminders
    2018 subscription rates
    Help needed for Endocrine conferences 2018
    ADSHG trustees and officers

    692 downloads

    Updated

  5. Free

    ADSHG Newsletter 131 – March 2018

    Addison's Disease Self-Help Group newsletter, issue 131, March 2018
     
    Welcome to the spring 2018 edition of the ADSHG newsletter. This issue contains exciting drug news on a new hydrocortisone formulation for children and a comprehensive Brexit update. Whether you are looking to get fit or already participating in a sport, Dr Rob Andrews offers lots of instructive advice about staying on top of an exercise programme with Addison's, while Jane Hodgkin reveals how words and phrases we use influence our moods and outlook. Recent medical research news, an ambulance update, fundraising stories, a website browsing guide and news on upcoming meetings complete this informative spring edition.
     
    Page 1: Spring is in the air
    Complete the ADSHG member survey!
    Great South Run 2018
     
    Page 2: From the President
    About the money
    Interested in becoming a trustee?
     
    Page 3: Recent drug news
    Diurnal’s Alkindi gets the go-ahead
    Emergency supply from community pharmacies
     
    Page 4: Brexit briefing
    Prepare for the worst: hope for the best
     
    Page 5: Adrenal medicines 
    Adrenal medicines in the UK and Ireland
    European Medicines Agency prepares to leave
     
    Page 6: Recent medical research
    Infectious causes of Addison’s
    Swedish patients with Autoimmune Addison’s are not overweight
     
    Page 7: Life skills
    Words for feeling better or worse
    Register with your ambulance trust
     
    Page 8: Ambulance update
    Turbulence on the ambulance scene
    A Christmas shopping surprise
     
    Page 9-11: Exercise and Addison's
    Bangkok Bulletin of teeth brushing and 750km
    Rare Diseases Day Tweet chat
    Powered by Krispy Kremes
    Staying on top of an exercise programme with Addison’s
     
    Page 12: Around the group
    Wibbly wobbly webby
     
    Page 12-13: Fundraising
    A guide for new hosts holding an Addison’s social meeting
    Fundraising stories
    Tuna bake recipe
     
    Page 14-15: Social update
    Meeting reports
    School charity events
    2018 social and medical meetings
     
    Page 16: The back page
    Reminders 
    2018 subscription rates
    Endocrine conferences 2018

    673 downloads

    Updated

  6. Free

    ADSHG Newsletter 130 - December 2017

    Addison's Disease Self Help Group newsletter, issue 130, December 2017
     
    Welcome to the winter 2017 edition of the ADSHG newsletter. This issue is bursting at the seams with news - essential drug updates, work on ambulance awareness and conference reports from members, as well as members' personal stories, fundraising updates and meeting dates. 
     
    We wish all our members a very Happy Christmas and a healthy New Year!
     
    Page 1: Happy New Year 2018, everyone!
    2018 subscription rise
    Online adrenal questionnaire now live
     
    Page 2: From the President
    About the money
     
    Page 3-4: Recent news
    New ambulance guidelines on adrenal crisis
    Julie's ambo update: moving the goalposts?
     
    Page 5-6: Drug news
    New shortage of liquid injectable hydrocortisone
    Chronocort update: cortisol replacement
     
    Page 7-9: Awareness update
    Exeter workshop on hormone dynamics
    CMA decision on unfair drug pricing
    ADSHG at the medical conferences
    ADSHG nursing prize awarded to ADSHG trustee!
     
    Page 10: Around the group
    ADSHG submission to Health Committee on Brexit - medicines
    Wibbly wobbly webby
     
    Page 10-12: Personal stories
    Living with a cortisol alert dog
    66 years with Addison's
    Romance is not just for the young
     
    Page 13: Fundraising update
    Cookery book launch
    Runners' personal bests!
     
    Page 14-15: Social update 
    Gill's goodbye column
    Meeting reports
    2018 social and medical meetings
    2018 fundraising events
     
    Page 16: The back page
    Reminders
    Conference dates
    2018 subscription rates
    ADSHG trustees and officers

    629 downloads

    Updated

  7. Free

    ADSHG Newsletter 129 - September 2017

    Addison’s Disease Self Help Group newsletter, issue 129, September 2017
     
    Welcome to the autumn 2017 edition of the ADSHG newsletter. This issue announces the arrival of the Addison’s cookery book, a enticing collection of healthy recipes compiled by Sue Chambers, with the story of how it came together. Our central feature reflects on June’s successful and enjoyable annual general meeting and medical lecture. Additionally, we report on the latest drug news, ambulance awareness and the ADSHG medical research grant, as well as the launch of the upgraded website.
     
    This issue of the newsletter also contains the 2017 Christmas catalogue order form insert (included as an extra download file here), highlighting items – including those all-important stocking fillers – available to purchase from our online shop.

    Page 1: Hot news from the kitchen
    Christmas catalogue 2017
    Don’t forget your flu vaccine
     
    Page 2: From the President
    About the money
     
    Page 3: Sue’s cookbook
     
    Page 4: Brexit update
    Customs uncertainty: possible drug supply disruptions
     
    Page 5-6: ADSHG and UK news
    Repeat prescription length and reserve supply
    Winter flu vaccine reminder
    Medical research grant report: uncovering biomarkers for steroid-dependent patients
    Fludrocortisone price hike causes hardship for dog owners
    Natural killer cells and Addison’s
     
    Page 7: Around the group
    Talking to Sheffield medical students
    Injectable hydrocortisone in Ireland
    Price watch
     
    Pages 8-10: AGM report
    Personal impressions from a volunteer
    Finance report
    Social media report
    Minutes of the 2017 AGM 
     
    Page 11: Ambulance awareness
    Ambo update: get yourself registered!
    East of England ambulance to the rescue
    Spotlight on Living Well
     
    Page 12: Personal experience
    Molly’s mind -  blogging my way through life
     
    Page 13: Fundraising update
    Donations report
     
    Page 14-15: Social update
    Gill’s social corner
    2017/8 social and medical meetings
     
    Page 16: The back page
    Reminders
    Conference dates
    2018 subscription rates
    ADSHG trustees and officers
     

    642 downloads

    Updated

  8. Free

    ADSHG Newsletter 096 - June 2009

    Addison's Disease Self Help Group, issue 96, June 2009
     
    Welcome to the summer 2009 newsletter. We make no apologies for the sober tone of this issue, which is all about emergencies. Two of the four horsemen of the apocalypse – pestilence and death – feature on these pages. Pestilence, in the guise of Mexican flu, appears on page 3, where we have some important news about the anticipated flu outbreaks in autumn 2009 and how to make sure we are all as well prepared as possible. Death, very sadly, appears on page 11 where we publish the autopsy report on a lady with a pituitary condition (not an ADSHG member) who died in her sleep, when she could not absorb oral steroids during a gastric infection. If she had been given injected steroids and prompt medical treatment, it is likely that this tragedy could have been prevented.

    Page 1: Front page
    All about emergencies
    With this issue
    Efcortesol shortage
     
    Page 2: From the President
    Members' fundraising
     
    Pages 3-5: Medical news
    A message from John Wass on flu preparedness
    28-day prescribing in the news
    Addison's in the medical press
     
    Page 6: AGM
    Social report
     
    Pages 7-8: ADSHG poster
    All about emergencies
     
    Pages 9-10: Personal experience
    My life turned upside down
     
    Page 11: Recent news
    A preventable tragedy
     
    Pages 12-13: Home and away
    News from Denmark
    Casa Luz calling
    Life in the slow lane
     
    Pages 14-15: Social update
    Social meeting reports
    Regional meetings
     
    Page 16: Back page
    Reminders

    15 downloads

    Updated

  9. Free

    ADSHG Newsletter 098 - December 2009

    Addison's Disease Self Help Group newsletter, issue 98, December 2009
     
    Welcome to the December 2009 newsletter, the final newsletter in our 25th anniversary year. To mark the passing of this special year, we are giving everyone a Silver Jubilee gift pack, enclosed with this newsletter. Our 25th anniversary celebrations, held in Guildford on 31 October, feature on pages 9 and 10, with Chris Scott and Daniel Kenward’s recollections of the early days of the group.

    Page 1: Front page
    Happy Christmas everyone
    Silver Jubilee gift pack
     
    Page 2: From the President
    Group news
     
    Pages 3-5: Medical updates
    What's new with flu?
    Modified release hydrocortisone: promising developments
    Nordic conference news
     
    Pages 6-7: Group news
    Sister awarded for saving mother
    'I want to see a consultant'
    Travelling light
     
    Pages 8-9: 25th anniversary meeting
    Speeches from the meeting
     
    Page 10: Medical report
    Oral contraceptive pills: a word of caution
    Renin tests - what do they mean?
     
    Page 11-12: Personal experience
    Helen Reddy: the woman I am now
     
    Page 12: Famous lives
    Eunice Kennedy Shriver
     
    Pages 13-14: Around the group
    Les says: fundraising update
    Social meeting reports
    Members' donations
     
    Page 15: Social update
    Regional meetings
     
    Page 16: Back page
    Reminders

    19 downloads

    Updated

  10. Free

    ADSHG Newsletter 109 - September 2012

    Addison's Disease Self Help Group, issue 109, September 2012
     
    Welcome to the autumn 2012 newsletter. This issue features an inspiring interview with the Canadian Olympic gymnast Nathan Gafuik, who represented Canada in the recent London Olympic Games. Now aged 27, Nathan was diagnosed with Addison’s some 12 years ago, aged 15. During the Olympic Games, he met our journalist member Jane, to talk to her about how he manages the combined challenges of his Addison’s and high level gymnastic competitions. You can read about Nathan’s remarkable courage and self-discipline on page 3.

    Page 1: Front page
    Our Addison's heroes
    With this issue: Christmas order form
     
    Page 2: From the President
    About the money
     
    Pages 3-4: Personal experience
    Olympic gymnast with Addison's
     
    Pages 5-6: Recent news
    What's new with flu?
    Nursing awareness raising
    Members' perspective
     
    Pages 7-8: AGM reports
    Remarks from the Chair
    Treasurer's report
    President's address
     
    Pages 9-10: Personal experience
    Kuwait calling: from New York
    The nurse's view
     
    Page 11: Recent drug news
    Fludrocortisone storage instructions
     
    Page 12: Home and away
    Travelling light
     
    Page 13: Fundraising update
    Ian's fundraising bit
     
    Pages 14-15: Social reports
    Jan's social corner
    Regional meetings
     
    Page 16: Back page
    Reminders
    Subscriptions

    27 downloads

    Updated

  11. Free

    ADSHG Newsletter 092 - June 2008

    Addison's Disease Self Help Group newsletter, issue 92, June 2008
     
    Welcome to the June issue. Drug issues are in the news again this summer with both good and bad news. The good news, on page 4, is that there are promising developments with the two new modified release hydrocortisone products now going through clinical trials. The bad news is that hydrocortisone and fludrocortisone supply problems have again hit parts of the UK. Please check the emergency supply procedures on the back page of the newsletter.

    Page 1: Front page
    Good news and bad news
    Florinef and hydrocortisone shortages
     
    Page 2: From the President
    Members' fundraising
     
    Pages 3-4: Recent news
    Repeat prescribing for essential steroid medication
    BES endocrine conference
    Modified release hydrocortisone: good news
     
    Pages 5-8: Medical update
    Adrenal emergency regular event for Addison's patients
    Employment and Addison's
    All about food
    Claire's weight loss story
     
    Page 9: Personal experience
    A guider's tale
    Famous lives: Helen Reddy
     
    Page 10: Around the group
    Diary of a persistent patient
    Crossword
     
    Page 11: Social update
    Regional meetings
     
    Page 12: Back page
    Reminders

    13 downloads

    Updated

  12. Free

    ADSHG Newsletter 097 - September 2009

    Addison's Disease Self Help Group, issue 97, September 2009
     
    Welcome to the autumn 2009 newsletter. It has been a busy summer for the trustees, as you can read in this issue. We have worked with the Society for Endocrinology to help their Clinical Committee prepare the information about H1N1 flu preparedness that is enclosed with this newsletter. We have written to the British Medical Journal about Addison’s awareness and the important role played by GPs in the early diagnosis of our condition. Our letter is reprinted on page 5. And we have been preparing our new range of Addison’s awareness gifts and stationery, along with enhancements to our Just Giving donations and fundraising pages, as you can read on page 8.

    Page 1: Front page
    Working with our medics
    Flu update
    Christmas cards
     
    Page 2: From the President
    Group news update
     
    Page 3-5: Recent news
    Patients taking hydrocortisone need longer prescriptions in light of flu pandemic
    New fludrocortisone - out of the fridge
    'I want to see the consultant'
    Prescription charges
    Addison's in the medical press
     
    Page 6-7: AGM
    Minutes
    Chair's remarks
    Treasurer's report
     
    Page 8: Group news
    Les says: fundraising update
    The shop
    Life in the slow lane
     
    Pages 9-12: Medical lecture
    Replacement therapy in Addison's disease
     
    Pages 13-14: Medical update
    Spotlight on Manchester: NWAS and hospital experience
     
    Page 15: Social update
    Regional meetings
     
    Page 16: Back page
    Reminders

    14 downloads

    Updated

  13. Free

    ADSHG Newsletter 125 - September 2016

    Addison's Disease Self Help Group newsletter, issue 125, September 2016
     
    Welcome to the September 2016 edition of the ADSHG newsletter. After what has been an eventful few months for the country, this issue is packed full with news from our members and supporters on initiatives to support better care for people with Addison’s. This issue of the newsletter also contained a Christmas shop order form insert, highlighting items available to purchase from our online shop.
     
    In this issue:
     
    Page 1: Our community of supporters
    With this issue
    Chinese emergency treatment translations
     
    Page 2: From the President
    About the money
     
    Page 3: Recent drug news
    Campaign to add steroids for Addison's to Critical Medicines List
    ADSHG submission to the Scottish Medicines Consortium on Plenadren
     
    Page 4: UK news
    Brexit - what are the implications?
     
    Page 5: Life skills
    Coping with ... telling family and friends
    Prevention is better than cure - get a flu vaccination this winter
    ADSHG Twitter Chat raises awareness
    Register your Addison's with your local ambulance trust
     
    Page 6: Research news
    Uncovering the purpose of the CYP21A1P pseudogene
     
    Pages 7-9: ADSHG AGM and annual report
    A social and informative day out
    Treasurer's report
    Publications and media team report
     
    Page 10: Personal stories
    Kate Granger - #hellomynameis
     
    Page 11: Personal experience
    On the move with Addison's
     
    Pages 12-13: Fundraising update
     
    Pages 14-15: Social corner
    Gill's social corner
    2016 social and medical meetings
     
    Page 16: The back page
    Reminders
    2016 subscription rate

    608 downloads

    Updated

  14. Free

    ADSHG Newsletter 01 web - February 2003

    Addison's Disease Self Help Group web newsletter, issue 1, February 2003
     
    Welcome to the first edition of the ADSHG web newsletter. It is intended to complement the bi-monthly newsletter and will be printed twice a year as part of your membership subscription, with the next edition scheduled for October 2003.

    Page 1: Front page
    Group update
     
    Page 2: Group news
    The editorial team
    Website statistics
     
    Pages 3-4: Personal story
    Julie's story
     
    Page 5: Medical lecture
    The patient - consultant relationship
     
    Page 6: Around the group
    Penpal scheme
     
    Page 7: Media update
    Letter to The Guardian
     
    Page 8: Addison's information
    What to do in an emergency
    ADSHG email group

    7 downloads

    Updated

  15. Free

    ADSHG Newsletter 128 - June 2017

    Addison's Disease Self Help Group newsletter, issue 128, June 2017
     
    Welcome to the summer 2017 edition of the ADSHG newsletter. This issue reports promising developments towards the new Zeneo autoinject device. We have more positive news on A&E awareness in Ireland and a report from Dr Anna Mitchell on her ongoing genetic analyses. In addition, we focus on the website updates to Living well and the launch of our injection videos on YouTube.
     
    In this issue
     
    Page 1: Planning your summer get-away?
    AGM and medical lecture tickets
     
    Page 2: From the President
    About the money
     
    Page 3–4: Recent drug news
    Latest news on the Zeneo needle-free auto-injection device
    Infacort update
    Brexit and the dispute over the European Medicines Agency relocation
     
    Page 5–6: ADSHG news
    Addison’s Ireland progresses A&E awareness
    Society for Endocrinology conference
    Grant for uncovering more about the genetic susceptibility of autoimmune Addison’s
    Updated surgical guidelines
     
    Page 7: Ambulance scene
    Have you seen the ambulance Forum makeover?
    North West ambulance to the rescue
    Registering with your local ambulance trust
     
    Page 8: Website news
    Spotlight on updates to Living well, Ambulance and A&E forums and YouTube injection video launch
     
    Page 9–10
    Help with applying to university and support available through the Disability Living Allowance
     
    Page 11–12: Personal stories
    Ibiza eye-opener
    Injection video saves the day in Zurich
    Food poisoning risk from broken salad leaves
     
    Page 13: Fundraising update
    Pub quiz night
    Donations report
     
    Page 14–15: Social update
    Gill’s social corner
    2017 social and medical meeting
     
    Page 16: The back page
    Reminders
    2017 subscriptions
    ADSHG trustees and officers

    619 downloads

    Updated

  16. Free

    ADSHG Newsletter 126 - December 2016

    Addison's Disease Self Help Group newsletter, issue 126, December 2016
     
    Welcome to the December 2016 edition of the ADSHG newsletter. This issue has positive news about drug developments on the horizon for 2017 as well as a report of our attendance at the recent Society for Endocrinology conference. Additionally, we feature several personal stories about the highs and lows of steroid-dependence.
     
    In this issue:
     
    Page 1: Good news for the new year
    It's subscription time
     
    Page 2: From the President
    About the money
     
    Pages 3-5: Recent drug news
    Infacort low dose hydrocortisone gets closer to launch
    Uncertainty over future access to EMA-licensed new drugs
    ADSHG represented at the the Scottish Medicines Consortium hearing on Plenadren
     
    Pages 6-7: UK news
    ADSHG at the endocrine conference
    ADSHG autumn medical seminar: Shoreham-by-Sea
     
    Page 8: ADSHG news
    Welcome to our new ambulance awareness coordinator
    Wibbly, wobbly, webby
     
    Pages 8-11: Personal stories
    Marty Clarke, Gaelic dream team football player
    My lactose-free hydrocortisone journey
    Conquering the London marathon
     
    Pages 12-13: Fundraising update
     
    Pages 14-15: Social corner
    Gill's social corner
    2016/17 social and medical meetings
     
    Page 16: The back page
    Reminders
    2017 subscriptions

    599 downloads

    Updated

  17. Free

    ADSHG Newsletter 127 - March 2017

    Addison's Disease Self Help Group newsletter, issue 127, March 2017
     
    Welcome to the March 2017 edition of the ADSHG newsletter. This issue has exciting news about drug developments on the horizon for this year as well as discussing the potential impacts of Brexit on patients. Additionally, we look at our Group's ongoing efforts to build positive diaglogue with medics in the UK and Ireland and focus on our new website updates.
     
    In this issue:
     
    Page 1: Get running
    AGM medical lectures and tickets
     
    Page 2: From the President
    About the money
     
    Pages 3-4: Recent drug news
    New needle-free injection device in the pipeline
    Infacort update
    Brexit and European Medicines Agency
    Future access to orphan drugs
     
    Pages 5-6: Ambulance scene
    Ambulance regulator invites our input
    Nursing and medical staff shortages set to increase
    What's new on the ambulance scene?
     
    Pages 6-7: Recent news
    New website tasting menu and new Living Well dishes to try
    British Society for Paediatric Endocrinology annual conference
     
    Pages 8-10: Features
    Coping with ... your GP practice
    Famous lives: Saint Elizabeth of the Trinity
     
    Pages 11-12: Personal stories
    Office first aid: ADSHG videos to the resuce
    Bootneck recovery
    Windermere cold plunge
     
    Page 13: Fundraising update
     
    Pages 14-15: Social update
    Gill's social corner
    2017 social and medical meetings
     
    Page 16: The back page
    Reminders
    2017 subscriptions

    629 downloads

    Submitted

  18. Free

    ADSHG Newsletter 120 - June 2015

    Addison's Disease Self Help Group newsletter, issue 120, June 2015
     
    Welcome to the summer 2015 newsletter. This issue takes an optimistic punt on the British weather – or our members’ overseas travel plans – and is packed full with hot weather and travel advice. You can find out how expert traveller Nathan Gafuik, the Canadian gymnast with Addison’s, handles long haul flights when he travels to international competitions, on page 5. And you can discover how ADSHG trustee Andrew is adapting to life in colourful, crowded, humid Bangkok. Ex-pat ADSHG member Yvonne explains how she survives in the searing Australian summers.
     
    Page 1: Front page
    Will this be the barbecue summer?
    Direct debit paper mandates
    Thai and Arabic emergency treatment translations
     
    Page 2: From the President
    About the money
     
    Page 3: ADSHG video appeal
    Self-stabbing for beginners: a how-to guide
    Further Efcortesol delay
     
    Pages 4-7: Travel with Addison's
    Handling the heat at home and abroad
    Nathan Gafuik: travelling the world
    Bangkok life
    Ten tip on how to manage your Addison's while on the road in Thailand
    Thailand travel tips: the doctor's view
    Holiday reminders
     
    Pages 8-9: Nursing awareness
    Addison's on the Northumbria curriculum
     
    Pages 10-11: Around the group
    Have you fallen off the list?
    Ambulance registration in the south west
    Genetic research: give blood
    Never Events framework 2015
    The true cost of prescriptions
    Is your Medic Exempt still valid?
     
    Page 12: Personal experience
    Our first emergency injection
     
    Page 13: Fundraising reports
    Ian's £undraising bit
    Wibbly Wobbly Webby
     
    Pages 14-15: Social reports
    Jan's social corner
    2015 social & medical meetings
     
    Page 16: Back page
    Reminders
    2015 subscription rates

    116 downloads

    Updated

  19. Free

    ADSHG Newsletter 110 - December 2012

    Addison's Disease Self Help Group newsletter, issue 110, December 2012
     
    Welcome to the winter issue of the Addison’s newsletter. 2012 was a busy, active year for the group, with plenty happening that we can look back on with satisfaction. On page 2 our President, Deana Kenward, describes her memorable day at Windsor Castle in November, when she was awarded an MBE for her 28 years of dedicated service to the ADSHG. As you will see in the photos, Deana (who ordinarily never smiles for the camera), couldn’t stop smiling all day. Well done, Deana, and richly deserved!
     
    Extra download file included: BMJ - How to avoid precipitating an acute adrenal crisis
     
    Page 1: Front page
    We wish you a merry Christmas
    Addison crisis: the latest advice
     
    Page 2: From the President
    MBE award: my big day out
     
    Pages 3-5: Recent drug news
    Rescue of Addison’s disease study
    Modified release Plenadren: the latest
     
    Pages 5-6: ADSHG at work
    ADSHG at endocrine conferences
    Nursing awareness letters
     
    Pages 7-10: 2011 annual report
    2011 report and accounts
     
    Pages 10-16: Personal experience
    Diamonds are forever: 60 years with Addison’s
    Not such a merry Christmas
    The doctor’s view
    Travelling light
     
    Page 17: Fundraising report
    Ian’s fundraising update
     
    Pages 18-19: Social reports
    Jan's social corner
    Regional meetings
     
    Page 20: Back page
    Reminders
    Subscriptions

    43 downloads

    Updated

  20. Free

    ADSHG Newsletter 118 - December 2014

    Addison's Disease Self Help group newsletter, issue 118, December 2014
     
    Welcome to the winter 2014 newsletter. There is good news and bad news in this issue. The bad news is about the shortage of injectable liquid hydrocortisone – Efcortesol – as you can read on page 3. The rest of the newsletter is more positive, beginning with a diary exclusive from Nathan Gafuik, the 29-year old with Addison’s who led the Canadian gymnastics team at the Glasgow Commonwealth Games this summer.
     
    Page 1: Front page
    ...and a healthy new year
    Subscription rises 2015
     
    Page 2: From the President
    About the money
     
    Page 3: Recent drug news
    Efcortesol shortage
     
    Pages 4-5: Personal experience
    Glasgow Commonwealth Games: Nathan Gafuik diary exclusive
     
    Pages 6-9: 2014 AGM
    Chair's welcome
    Observations from the floor
    Treasurer's report
    Facebook report
    Member's feedback
     
    Pages 10-11: Around the group
    NHS hospital safety consultation
    Volunteers needed: endocrine conferences 2015
    Nursing awareness: your help needed
    CAH is Us hosts London seminar
     
    Page 12: More drug news
    Prednisolone pricing controversy continues
     
    Pages 13-15: Social reports
    Jan's social corner
    2015 social meetings
     
    Page 16: Back page
    Reminders
    Subscription rates

    56 downloads

    Updated

  21. Free

    ADSHG Newsletter 124 - June 2016

    Addison's Disease Self Help Group newsletter, issue 124, June 2016
     
    Welcome to the June 2016 edition of the ADSHG newsletter. This issue is packed full of news about some surprising recent drug developments, some positive ambulance news, the forthcoming relaunch of our main website, recent marathon triumphs of our fundraising runners, and some riveting personal travel stories. In this issue:
     
    Page 1: Making the most of the summer holidays
    New in the ADSHG shop
    In this issue
     
    Page 2: From the President
    About the money
    Emergency injection videos
     
    Page 3: Medications update
    Lactose-free hydrocortisone
    Fludrocortisone out of the fridge!
    New round hydrocortisone
    New pack design, same product
    2.5mg hydrocortisone pellets: not so strong
     
    Pages 4-5: The new look ADSHG website arrives
     
    Page 6: Ambulance news
    Calling 999: hints and tips
     
    Page 7: Conference news
    ADSHG at medical conferences
     
    Pages 8-9: Travel with Addison's
    Holiday season
    You can never be too sure
    Rare Disease Day: raising awareness of Addison's
     
    Pages 10-12: Personal experience
    A sky-high crisis
    The doctor's view...
    Fulfilling a dream: running the London marathon
     
    Pages 12-13: Fundraising
     
    Pages 14-15: Social corner
    Gill's social corner
    2016 social and medical meetings
     
    Page 16: The back page
    Reminders
    2016 subscription rate

    713 downloads

    Updated

  22. Free

    ADSHG Newsletter 123 - March 2016

    Addison's Disease Self Help Group newsletter, issue 123, March 2016
     
    Welcome to the spring 2016 issue of the ADSHG newsletter. This issue is packed with riveting personal stories, all with a happy ending. In this issue:
     
    Page 1: Springing into spring
    Video launch
    Marathon mission
     
    Page 2: From the President
    About the money
    Meet the new clinical panel
     
    Pages 3–4: Recent drug news
    Fludrocortisone scare
    Hydrocortisone concerns
    Hydrocortisone 2.5mg pellets: are they an alternative?
     
    Pages 4–5: Ambulance news
    Ambulance protocols: Irish success story
    East of England ambulance protocols
     
    Pages 6–9: Personal experience
    ADSHG videos help prepare for emergency injection
    Our first emergency injection experience
    Diagnosis slow: sodium low
    The doctor's viewpoint
     
    Pages 9–10: Around the group
    Hydrocortisone and levothyroxine: double trouble or harmonious duet?
     
    Pages 10–13: Fitness focus
    Land's End to John O'Groats: the long way back to the top
    Capital Marathon Challenge
    Running to success
     
    Pages 13–14: Fundraising
     
    Pages 14–15: Social corner
    Gill's social corner
    2016 social and medical meetings
     
    Page 16: Back page
    Reminders
    2016 subscription rate

    817 downloads

    Updated

  23. Free

    ADSHG Newsletter 03 web - April 2004

    Addison's Disease Self Help Group web newsletter, issue 3, April 2004
     
    It is hard to believe that the first webnewsletter was launched a full year ago. Yet much has happened within the group in the last twelve months. We have made significant progress towards achieving charitable status. Many of us have benefited from the “refresher” emergency injection sessions and, as part of our continuing emphasis on emergency management procedures, there is a step-by-step guide to administering an injection of Solu-Cortef, following on from the Efcortesol instructions (web newsletter 2), on pages 4 and 5.
     
    Page 1: Front page
    Group update
     
    Page 2: Group news
    The editorial team
    Website statistics
     
    Pages 3-4: Personal story
    Julie's story
     
    Page 5: Medical lecture
    The patient - consultant relationship
     
    Page 6: Around the group
    Penpal scheme
     
    Page 7: Media update
    Letter to The Guardian
     
    Page 8: Addison's information
    What to do in an emergency
    ADSHG email group

    17 downloads

    Updated

  24. Free

    ADSHG Newsletter 02 web - October 2003

    Addison's Disease Self Help Group web newsletter, issue 2, October 2003
     
    Welcome to the second edition of the ADSHG web newsletter! In response to the continuing high level of interest in the emergency injection procedure, we hope that the step-by-step guide to administering the injection will be a helpful reference to anyone unsure of what to do. Research Nurse Suzanne Curran’s demonstration at the AGM and annual lecture on 10th May was a great success and this kind of supervised session is a real confidence booster, proving that we can all do it if we know how.
     

    Page 1: Front page
    Group news
     
    Pages 2-3: Medical information
    How to give an emergency injection of Efcortesol
     
    Pages 4-7: Personal experience
    Pam's story
    The doctor's view
    The ambulance service view
    Alan's story
     
    Page 8: Media
    Letter to The Lancet

    7 downloads

    Updated

  25. Free

    ADSHG Newsletter 04 web - October 2004

    Addison's Disease Self Help Group web newsletter, issue 4, October 2004
     
    As the group moves towards achieving charitable status, we are also establishing and developing some very positive links with medical practitioners and other members of healthcare services.
     

    Page 1: Front page
    Group update
     
    Page 2: Medical update
    London ambulance conference presentation
     
    Pages 3-5: Personal experience
    Jackie's story
    The doctor's view
     
    Pages 5-8: Medical lecture
    Managing your steroid medication

    13 downloads

    Updated

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About us

The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland.The group was formed in 1984 and is a UK registered charity no. 1179825.

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