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Most publications are free to download or can be purchased in a hospital pack from the online shop. You can help support the charity and development of new publications for those with Addison's disease by making a donation now.
Newsletters (members only)
Member-only newsletters published quarterly with features and articles about living with Addison's and group news.
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ADSHG Magazine - Winter 2023/4
By Philippa Sharman
Welcome to the Winter edition of the ADSHG magazine!
In conjunction with our website and social media platforms, our magazine aims to keep you up-to-date with the latest news and developments from across the Addison’s and adrenal insufficiency community. We are exceedingly grateful to everyone who contributed to this magazine issue and all our amazing volunteers who work tirelessly to support and promote our charity. Thank you for being part of the ADSHG.
In this edition:
Page 2. Magazine Contents
Page 3. Welcome from the ADSHG Team & Deana
Page 4. View from the Chair
Page 5. Ireland update & meeting round-up
Page 6/7. Zöe’s Story: Taking a ‘Tea Break’
Page 8/9. Behind the Research: U-RHYTHM – measuring your cortisol levels
Page 10/11. Children and Young People – Staying safe with adrenal insufficiency
Page 12. Be Ambulance Aware - calling 999 and A&E
Page 13. Stay Well This Winter – medication for sick days
Page 14. Ingrid’s Story: Exercising with Addison’s
Page 15. Sam’s #ShareYourKit
Page 16/17. Attending the Society for Endocrinology Conference in Glasgow
Page 18. Meet the Trustee: Chris Walters
Page 19. Becoming an ADSHG Trustee – Your invitation!
Page 20/21. Behind the Research: The PULSES trial – Pulsatile Cortisol Infusion Pump
Page 22/23. Albert’s Story: my adrenal crisis experience
Page 24/25. Tattoos with Addison’s and adrenal insufficiency
Page 25. NICE Adrenal Insufficiency Guidelines 2024
Page 26/27. Introducing our ‘Super 7’ Runners
Page 28/29. 2023 Social Meeting Updates
Page 30/33. Thank you for fundraising!
Page 34. Addison’s admin
Page 35. Say goodbye to the Designer: Dave Thorp
427 downloads
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ADSHG Magazine - Summer 2023
By Philippa Sharman
Welcome to the Summer edition of the ADSHG magazine!
In conjunction with our website and social media platforms, our magazine aims to keep you up-to-date with the latest news and developments from across the Addison’s and adrenal insufficiency community. We are exceedingly grateful to everyone who contributed to this magazine issue and all our amazing volunteers who work tirelessly to support and promote our charity. Thank you for being part of the ADSHG.
In this edition:
Page 2. The ADSHG Team
Page 3. A note from the Editorial Team and Deana
Page 4. Rare Disease Day 2023 Roundup!
Page 5. NHS Website: Addison's pages updated
Page 6/7. Bexi - Getting married when you have Addison's
Page 8. Ireland update
Page 8. Meet the Volunteer - Frances
Page 9. Meet the Trustee - Thankooshan
Page 10. HIV: A hidden cause of Adrenal Insufficiency
Page 11. Living with Addison's and HIV?
Page 12. Addison's Abroad
Page 13. Society for Endocrinology Clinical Update & Endocrine Nurse Update 2023
Page 14/15. ADSHG represents adrenal insufficiency's 'Patient's Voice' at the European Congress of Endocrinology
Page 16. Ambulance update - be prepared
Page 16. Calling 999 and A&E
Page 17. On the Forum
Page 18/19. Dan's Story: an adrenal crisis and hospital admission
Page 20. Behind the research - systematic review
Page 21. ADSHG backs calls to Stop Endocrine Disrupting Chemicals
Page 22/23. Research Update: Bionics+ scientists want your lived experiences
Page 24/25. ADSHG Charity Dinner and Casino Night
Page 26/27. Thank you: London Landmarks Half Marathon
Page 28/29. Thank you for fundraising!
Page 30. Donate while you shop
Page 30. Easyfundraising & Give as you Live
Page 30. Donate while you shop
Page 31. Authors, Etsy creators and business owners - why Work for Good?
Page 32. Give the gift of support to people with Addison's disease in your will
Page 33. Addison's admin
Page 34. #ShareYourKit - Fiona
Page 35. Meet the Designer: Poppy
414 downloads
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ADSHG Magazine - Winter 2022
By Philippa Sharman
Welcome to the Winter edition of the ADSHG magazine. 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 and adrenal insufficiency community.
In this edition:
Page 2. Editor’s note & Deana's message
Page 3. View from the Chair
Page 4/5. Personal Experience: Mark
Page 6. The Wren Project
Page 7. Meet the Volunteer: Anne
Page 7. Society for Endocrinology BES 2022
Page 8/9. Could PIFU help you?
Page 10/11. Addison's Awareness Stand
Page 12. Children and Young Adults: Meet Chloe
Page 13. ADSHG Member Zooms
Page 13. Womens Health
Page 14. Ireland Update
Page 15. Research Update
Page 16. NICE Adrenal Insufficiency Guidelines 2024
Page 16/17. Ambulance Update
Page 18/19. Personal Experience: Michael's 'Trip Around the World'
Page 20/21. Research Update: Self-management for Patients
Page 22. Future Trustees
Page 22. Meet the Trustee: Dr Alessandro Prete
Page 23. Injection Shortages
Page 24/25. Thank you for Fundraising
Page 26. London Marathon, Great South Run & London Landmarks Half Marathon
Page 27. Personal Experience: Karen
Page 28/29. COVID-19 Update - Boosters & Flu Jab
Page 29. Social Meeting Updates
Page 30. Donate while you shop
Page 30. Leave a legacy
Page 31. Addison's Admin
Page 32/33. Meet the Designer: Dr Gary Hammer
Page 34. #ShareYourKit: Meet Hannah
Page 35. The A team: Who’s who in the ADSHG
310 downloads
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ADSHG Magazine - Summer 2022
By Vick Smith
Welcome to the Summer edition of the ADSHG magazine. We are very lucky to have to all our amazing volunteers who've worked tirelessly to support and promote the ADSHG. In conjunction with our website and social media platforms our magazine aims to keep you up-to-date with the latest news and developments from across the Addison’s community.
TABLE OF CONTENTS
p2 Editor’s note/Deana
p3 Tribute - Katherine White
p4/5 Addison’s Disease Day 2022
p6/7 Autoimmune Polyglandular Syndrome p8 Meet the Volunteer Jackie Lees
p8/9 Sharps into venues
p10/11 Personal Experience: Anna Power
p12 Children and Young Adults
p13 From the Forum
p14 England Rare Diseases Action Plan
p15 Ireland update
p17 Ambulance update
p18/19 Personal Experience: Sarah Mather
p20 Research update: Royal College of General Practitioners
p21 Research update: University of London
p22 Meet the Trustee: Lisa Shepherd
p22 Simba PPI Adrenal
p22/23 ADSHG sponsor medical students for ECE 2022
p23 ‘Patient’s Voice’ at ECE 2022
p24 SfE Endocrine Nurse update 2022
p25 Dislike splitting tablets?
p26/27 Personal Experience: Giulia Bould
p28/29 Thank you for fundraising
p30 Donate while you shop p30 Gifts and Wills
p31 Addison’s admin!
p32 #ShareYourKit
p33 Future Trustees
p34 Meet the Designer: Anne Doggett
p35 The A team: Who’s who in the ADSHG
339 downloads
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ADSHG Magazine - Winter 2021
By Vick Smith
Welcome to the Winter edition of the ADSHG magazine. 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 and adrenal insufficiency community.
In this edition:
Page 2. Editor’s note/Deana
Page 3 & 17. Confused about drug shortages?
Page 4/5. COVID-19 Update
Page 6/7. HSJ Awards
Page 8/9. Feelings about COVID freedoms
Page 10. Children and Young Adults: Meet Becca
Page 11. Ireland update
Page 12/13. Ambulance update
Page 13. Paramedic Zooms
Page 14 Drug news: Fludrocortisone
Page 15. Drug news: NICE guidelines
Page 15. European Adrenal Network Conference
Page 16. Bringing down generic drug prices
Page 18/19. Personal Experience: Ali’s story
Page 20/21. Personal Experience: Lynsey’s story
Page 22. Meet the Trustee: Philip Kaye
Page 22/23. ADSHG research update
Page 24/25. Research surveys
Page 26. SfE BES Conference
Page 27. Annette Louise Seal Memorial Award
Page 28/29. Funding special: London Marathon
Page 30/31. Funding special: Great South Run
Page 32/33. Funding special: Thank Yous
Page 34. Social meetings: Updates
Page 35. Fundraising: Donate while you shop
Page 35. Gifts and Wills
Page 36/37. Meet the Christmas Card Designers
Page 38. Addison’s admin!
Page 39. #ShareYourKit
Page 40. View from our Treasurer
Page 40. Message from our Chair
Page 41 . Future Trustees
Page 42. Meet the Designer: Charlotte
Page 43. The A team: Who’s who in the ADSHG
345 downloads
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ADSHG Magazine - Summer 2021
By Vick Smith
Welcome to the Summer edition of the ADSHG magazine. We are very lucky to have to all our amazing volunteers who've worked tirelessly in this time of COVID-19 to support and promote the ADSHG. In conjunction with our website and social media platforms our magazine aims to keep you up-to-date with the latest news and developments from across the Addison’s community.
TABLE OF CONTENTS
Page 2 A note from the editors and Deana
Page 3 Meet the trustee: Robert McClements
Page 4 A message from our chair/Treasurer update
Page 5 AGM 2021
Page 6 Caring and grieving with Addison’s
Page 7 Stress dosing
Page 7 Coronavirus update
Page 8/9 Adams story: the AI warrior
Page 10 Meet Becca
Page 11 Ireland update
Page 12 Ambulance update
Page 13 Paramedic training
Page 14 Drug news: Chronocort
Page 15 Drug news: Fludrocortisone
Page 15 Policy news: UK Rare Diseases Framework
Page 17/18 CoMICs
Page 19/20 Ensuring sufficiency in Addison’s
Page 21/22 Addison’s Q&A: Why salt?
Page 23/24 ADSHG research update
Page 25/26 Addison’s Disease Day 2021
Page 27 Medical Conferences: eECE2021
Page 28 Social meetings update
Page 29/30 Billie’s 100 flights for Addison’s
Page 31 London marathon runners 2021
Page 32/33 Fundraising: Thank you’s
Page 34 Leaving a legacy
Page 34 Donate while you shop
Page 35/36 ADSHG published in GP Pulse magazine
Page 37/38 Addison’s admin
Page 39/40 Rare Disease Day 2021 roundup
Page 41 Famous lives: Saint Elizabeth of the Trinity
Page 42 Meet the designer: Molly Clair Design
Page 43 The A team: Who’s who in the ADSHG
396 downloads
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ADSHG Newsletter 138 - Winter 2020
By Vick Smith
Welcome to the Winter 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.
In this edition:
Page 2. Editor’s note / Coronavirus update
Page 3. Introduction to new Digital Communications and Engagement Officer
Page 3. Meet the trustees
Page 4. A message from our chair / Treasurer update
Page 5. Creating an online video on staying safe during COVID-19
Page 6. Get your flu jab early
Page 7. Walking, life and Addison’s
Page 9. A thank you from the Brazilian Addison’s Association
Page 10. Julie’s ambulance update / Christmas card winners
Page 11. CMA investigation into fludrocortisone pricing in 2016 – an update
Page 11. ADSHG FORUM - Women’s Health
Page 12. ADSHG FORUM - Up-dosing for premenstrual symptoms (PMS)
Page 12. ADSHG FORUM - Pregnancy and Addison’s disease
Page 13. ADSHG FORUM - Managing the menopause
Page 14. ADSHG FORUM - Menopause and bone density
Page 16. My perspective: learning to be prepared
Page 17. My perspective: managing Addison’s on holiday
Page 18. & 19 Social meetings / Recent donors
Page 20. & 21 Fundraising
Page 22. Leaving a legacy / Amazon Smile charity ID
Page 23. Be prepared, stay safe
Page 24. - 26 Spotlight on social media
Page 27. The ADSHG team who’s who
571 downloads
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ADSHG Magazine 137 - Summer 2020
By Vick Smith
Welcome to the Summer edition of the ADSHG newsletter. We are very lucky to have to all our amazing volunteers who've worked tirelessly in this time of COVID-19 to support and promote the ADSHG. In conjunction with our website and social media platforms our magazine aims to keep you up-to-date with the latest news and developments from across the Addison’s community.
Page 2 A note from the Editor / Coronavirus Update
Page 3 Trustees Tribute / Introduction to New Trustees
Page 4 Introduction to New Trustees
Page 5 Introducing the new Operations Manager
Page 6 Report from the AGM
Page 7 View from our Treasurer / A message from our Chair
Page 8 Meet the Trustees: Dom Hargreaves / Ambulance Update
Page 9 Research study update
Page 10 Volunteers need / Addison’s Ireland / CMA judgement on Fludrocortisone pricing
Page 11 Your wellbeing - Making life choices
Page 12 Your wellbeing - Diet for life
Page 13 Your wellbeing - Holidaying in isolation
Page 14 Your wellbeing - Walking your way to good health / Music
Page 15 My perspective: Lockdown
Page 15 - 18 Events Calendar / Onloine social broadcast
Page 19 & 20 Recent donors / Fundraising
21 - 23 Spotlight on Social Media
24 The ADSHG Team who’s who
362 downloads
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ADSHG Newsletter 136 - Winter 2019
By Vick Smith
Welcome to the Winter 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.
In this edition:
Page 2 A Note from the Editors & Message from the Chair
Page 3 AGM
Page 4 Trustees Tribute
Page 5 Meet the Trustees - Lisa Shepherd
Page 6 Interim Operations Manager and a View from our Treasurer
Page 7 Addison’s Ireland
Page 8 Julies Ambulance Awareness, Call for Volunteers
Page 9 Stress and Addison’s, Stress Breathing
Page 10 & 11 Continuous Subcutaneous Hydrocortisone Infusions
Page 12 - 15 My perspective – Stories from the community
Page 16 & 17 Events Calendar
Page 8 & 19 Donations and Fundraising
Page 20 Spotlight on Social Media
Page 21 New website
Page 22 Research Matters
Page 23 The ADSHG Team and Trustees
89 downloads
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ADSHG Newsletter 135 - Spring 2019
By ADSHG
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.
In this edition:
Page 2 A note from the Editor
Introduction to members of the ADSHG team
Page 3 ADSHG – The community you belong to
Page 4 Update from the CEO
Page 5 Announcing Addison’s Friends
Message from the Chair
Page 6 View from our Treasurer
Meet the Trustees – Stuart Pinkerton
Page 7 Julie’s ambulance awareness update
Page 8 Paramedic training
Page 9 Shipments and Ports
Page 10 Research Matters
Page 12 The importance of diurnal rhythm
Page 13 A patient’s experience with circadian dosing
Page 14 My perspective
Update from Addison’s Ireland
Page 15 Membership and Subscriptions
Page 16 Social meetings
Page 18 Donations and Fundraising
Page 20 Tweet chat
Page 22 Facing Addison’s – Telling our stories
Page 23 The ADSHG team
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ADSHG Newsletter 134 - December 2018
By ADSHG
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
635 downloads
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ADSHG Newsletter 133 – September 2018
By ADSHG
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
535 downloads
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ADSHG Newsletter 132 – June 2018
By ADSHG
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
711 downloads
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ADSHG Newsletter 131 – March 2018
By ADSHG
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
692 downloads
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ADSHG Newsletter 130 - December 2017
By ADSHG
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
634 downloads
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ADSHG Newsletter 129 - September 2017
By ADSHG
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
648 downloads
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ADSHG Newsletter 128 - June 2017
By ADSHG
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
623 downloads
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ADSHG Newsletter 127 - March 2017
By ADSHG
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
637 downloads
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ADSHG Newsletter 126 - December 2016
By ADSHG
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
605 downloads
Updated
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ADSHG Newsletter 125 - September 2016
By ADSHG
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
612 downloads
Updated
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Free
ADSHG Newsletter 124 - June 2016
By ADSHG
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
721 downloads
Updated
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Free
ADSHG Newsletter 123 - March 2016
By ADSHG
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
822 downloads
Updated
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Free
ADSHG Newsletter 122 - December 2015
By ADSHG
Addison's Disease Self Help Group Newsletter, issue 122, December 2015
Welcome to the winter 2015 issue of the ADSHG newsletter. This issue celebrates the achievements of our members and their families in 2015, during which they have climbed mountains, swum the ocean and run races on our behalf. In this issue:
Page 1: A box of celebrations at Christmas
ADSHG schools leaflet now online
Direct Debit: with this issue
Page 2: From the President
About the money
Pages 3-5: Mont Blanc special
Climbing Mont Blanc - with Addison's and Bessie Bear
High altitude climbing with Addison's - the practicalities
Pages 6-7: Conference report
ADSHG at the Edinburgh Endocrine Conference 2015
Feedback from volunteers on our stand
ADSHG posters
Pages 8-9: Around the group
Edinburgh seminar: observations from the floor
Register with your ambulance trust
Remember your flu vaccine
Send a card this Christmas
Wibbly, Wobbly, Webby
Pulses study update
Pages 10-12: Personal experience
Bangkok life: nothing like an early start
European odyssey
Have a very restful Christmas
Donations report
Pages 12-15: Social corner
Margaret's social corner
Addison's Ireland meeting: Limerick
Hospital meeting a huge success
Social and medical meetings
Page 16: Back page
Reminders
2016 subscription rates
This issue of the newsletter also contained a special fundraising insert highlighting our members' and supporters' fundraising achievements throughout 2015.
505 downloads
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ADSHG fundraising special - December 2015
By ADSHG
This special insert to the ADSHG December 2015 newsletter highlights the wonderful fundraising achievements of our members and supporters throughout the year.
It includes:
ADSHG at the Great Runs: Great North Run and Great South Run Dragonera open sea swim Tameside's got talent ... in aid of ADSHG Ian's fundraising update
34 downloads
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ADSHG Newsletter 121 - September 2015
By ADSHG
Addison's Disease Self Help Group newsletter, issue 121, September 2015
Welcome to the autumn 2015 newsletter. This issue starts with a controversial topic: on page 3, we respond to recent claims from The Times columnist Tanya Byron about the psychological health of people with Addison’s. Perhaps because she has only a passing familiarity with the effects of high-dose prednisolone, Prof Byron seems unaware of the difference between the side effects from therapeutic steroid doses that may be more than ten times higher than replacement, and the restorative, life-saving benefits of replacement hydrocortisone.
Page 1: Front page
Because steroids are for life
Mistaken media views on Addison's
Efcortesol update
Page 2: From the President
About the money
Page 3: In the media
Media comments on adrenal insufficiency and mental health: the ADSHG viewpoint
Pages 4-5: Personal experience
Nathan Gafuik: Crisis in Moscow
Happy to inject!
Page 6: Irish news
Addison's Ireland news
ADSHG at European Congress of Endocrinology
Pages 7-9: ADSHG Annual Report 2014
Chair's report to the AGM
A day in the capital
Treasurer's report
Publications & media team report
Pages 10-11: Around the group
What's new with flu?
Join our letter writing campaign
Alfred Potter memorial medical research award
Update: out-of-date Medic Exempt fines
Are you red flagged?
Pharmacy labels
Page 12: Personal experience
Why feedback to ambulance trusts is important: my experience
Paramedics: the frontline perspective
Page 13: Fundraising reports
Ian's £undraising update
Pages 14-15: Social reports
Jan's social corner
Wibbly Wobbly Webby
2015 social & medical meetings
Page 16: Back page
Reminders
2015 subscription rates
90 downloads
Updated
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