Our new website is now live : www.addisonsdisease.org.uk - please update your bookmarks!

Jump to content

General articles

Sign in to follow this  
Addison's disease is a rare condition, little known to the general public, that receives only occasional media attention. In this media section, we provide resources, explain how we assist media enquiries where we can, and list the ADSHG's past press releases.

43 articles in this category

  1. Concordia, the supplier of hydrocortisone sodium phosphate, has confirmed that it has stopped manufacture until Q3 2018 due to difficulties in sourcing the active ingredient for its liquid injectable hydrocortisone. 

    • 11,195 views
    • 15,143 views
    • 6,513 views
  2. You can make an immediate donation to the ADSHG's work, through any of our our online giving pages. ADSHG is registered with a number of reputable online giving agencies, listed below. You can chose to make your donation to either of the two purposed appeals the charity maintains, or to make a general donation to our work.

    • 1,589 views
  3. Our new website has been launched - check out www.addisonsdisease.org.uk

    • 2,384 views
  4. Over recent weeks, people have become increasingly alarmed about media stories of Brexit-related shortages of medicines. We’ve been working closely behind-the-scenes with the Department of Health, key pharmaceutical suppliers and the NHS Specialist Pharmacy Services team to represent members’ views.

    • 3,051 views
  5. As 2018 quickly rolls into the New Year, our double Christmas & new Year edition of our newsletter is available to download in the Members' Area here.

     

    nl134-cover.png

    • 1,066 views
  6. We're delighted to be participating in the Great Scottish 10k run in Glasgow on Sunday 29th September 2019. Places are available now for runners in support of ADSHG.

    scot-run-pic.jpg

    • 838 views
    • 82,593 views
  7. Anyone who is considering leaving a gift in their will is likely to have questions about it. Below we’ve addressed some of the most common ones we’re asked, but you can always contact us by emailing donations@addisons.org.uk if others come to mind.

    • 290 views
  8. This section describes how to give an emergency injection of injectable hydrocortisone for adrenal crisis prevention. The explanations use videos and illustrated guides to describe how to prepare and administer the injections and are relevant for work colleagues, family and friends as well as self-injection.

    • 60,434 views
  9. Join Invicta for their first concert of Music for Advent and Christmas. The concert is in support of the Addison's Disease Self-Help Group and will feature traditional Christmas carols alongside some stunning choral works for the Advent season.

    • 1,047 views
  10. The Addison's Clinical Advisory Panel has issued guidelines for the emergency medical treatment of adrenal crisis, and for management of steroid-dependence during surgical procedures. You can download these for free from the links below to give to medical professionals who are overseeing your treatment.

    • 7,490 views
    • 12,948 views
    • 33,472 views
  11. In June 2015, Stuart Jones and his friend Richard Topping climbed Mont Blanc, the highest peak in Western Europe, to raise money for the ADSHG and Great Ormond Street Hospital. Stuart has Addison’s himself, so this was an amazing achievement and we are so grateful to them for choosing to support us in this way.

    • 1,743 views
  12. Featuring in the December 2017 newsletter, we hear the inspirational story of Jan and her assistance dog Rhea, trained to recognise low cortisol levels.

    • 4,833 views
  13. The ADSHG is holding a Special General Meeting (SGM) on Sunday 18th November, covering our move to Charitable Incorporated Organisation (CIO) status and to vote in a new constitution. It will be followed by a Q&A session by Professor Eystein Husebye, head of the Department of Endocrinology at the University of Bergen. Tickets are available in the online Shop.

    • 1,650 views
  14. In this section we feature real-life experiences of emergencies, contributed by members of the ADSHG. Here, our members describe how they coped with severe illnesses or accidents. In addition, we have asked a medical adviser to the ADSHG to comment on the experiences of our members, and where necessary, to offer suggestions as to what the individual might have done differently. Read them here...

    • 2,180 views
  15. 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."

    • 977 views
  16. The group's highly regarded publications for people with Addison's are undergoing a redesign over the coming months, improving their visual design and also accessibility for people with visual impairments. 

    • 1,908 views
  17. The autumn edition of the ADSHG newsletter is now available in the Publication centre and  members can download it here...

    • 4,034 views
  18. We've manage to secure three places in the Dublin Marathon on Sunday 27th October 2019. 

    communitydublin-marathon.png

    • 484 views
  19. Addison's in the workplace

     

    When: Monday 29 May, 19:00 - 20:00 BST
    Where: hosted by @AddisonsUK, using hashtag #AddisonsQA

     

    The next Addison's tweet chat will take place on the 100th anniversary of John F Kennedy's birthday, 29 May.

     

    The theme for this event will be Addison's in the workplace.

    • 2,908 views
  20. Marie-Helene was sick throughout her pregnancy, but her symptoms were dismissed as a normal part of pregnancy until she was close to death.

    • 1,345 views
  21. The ADSHG is holding a Twitter conversation to mark Rare Diseases Day 2017. The theme for our event will be "Working towards good doctor-patient relationships".

     

    When:Tuesday February 28th 7 - 8pm
    Twitter hashtag: #AddisonsQA
    Twitter host: @AddisonsUK

    • 1,742 views
  22. Sue tells us about how delays in receiving a diagnosis for her low sodium levels affected her health and ultimately led to her experiencing an adrenal crisis.

    • 7,118 views
  23. Many people raise funds for the group through participating in sponsored events; please help us by sponsoring someone undertaking such an event in the year ahead. Some of our fundraisers are group members with Addison's; others are friends and family.  The ADSHG also purchases a limited number of charity places in one or two running events a year. You can find details of place availability in 2018 in this article.

    • 6,187 views
  24. This is the page where we list current fundraising opportunities available with the Addison's Disease Self-Help Group, through the group's purchased charity places.  We also have independent runners and community fundraisers who have secured their own places in the various competitive events or created their own community event. You can read more about our various fundraisers who are seeking individual sponsorship in this article.

    • 3,565 views
  25. Fundraising ideas don't have to be sporty. Helping the work of the ADSHG doesn’t have to mean running a marathon, or swimming a mile. If you’ve got another idea, we are here to help you make it work.

    • 1,954 views
  26. The ADSHG relies on volunteers to keep its activities going. The charity is self-help in name and self-help in what it does. Many of our volunteers give just a few hours or half days per year to help with local events, while others take on a year-round responsibility.

    • 2,715 views
  27. This section provides electronic links to the websites of other organisations in the UK and around the world that provide support and information to people with Addison's and adrenal insufficiency. As many people with Addison's also live with other autoimmune conditions too, we have included some links to relevant patient groups for these conditions.

     

    • 11,082 views
  28. 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.

    bes-logo.png

    • 984 views
  29. Last December, we conducted our largest membership survey, ever. Over 600 members shared their thoughts on how we are doing - and where we can improve. Our trustees have already been making good use of the results. Earlier this month, we held our first Trustee Planning Day to think about our objectives for 2019/2020 and kick off some initial projects.

    The results of the survey are online (take a look here and here). We’ll be publishing a summary in a forthcoming newsletter. We welcome your thoughts, too - drop us a line at ideas@addisons.org.uk.

    • 3,934 views
  30. Learning to live with Addison’s includes making sure you’re ready for all eventualities! For this reason, it’s important to be registered (red flagged) with your local ambulance service in case you need to go to hospital and receive emergency treatment on the way.

    • 6,078 views
  31. The member-only More personal & life stories section features more members recounting their experiences of living with Addison's and how they manage their condition on a day-to-day basis. Read more here...

    • 877 views
  32. John joined ADSHG after reading a magazine article by President Deana Kenward around 2003. In the years since then, he and his wife Pam have become active group members, including regularly hosting social meetings at their home. John writes for us here about his experience of living with Addison's for 66 years.

    • 1,947 views
  33. Many members are experiencing sign-in/session sign-out and forgot password issue and we apologise for this.   We are working to resolve the issue with our service partners (web hosting company and software supplier).  This article features some suggests which have helped a number of members to treat the symptoms and avoid the issues.

    • 606 views
  34. The Trustees of Addison’s Disease Self-Help Group (ADSHG) are delighted to announce the appointment of the charity’s new Chief Executive, Neil McClements, following a rigorous, open recruitment process. 

    • 842 views
  35. 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!

    • 930 views
  36. At the Special General Meeting of the Addison’s Disease Self-Help Group (ADSHG) held on Sunday 18th November 2018, the resolution set before the meeting to convert to Charitable Incorporated Organisation (CIO) status was carried.

    • 502 views
  37. As previously indicated to members online and in the newsletter, the Special General Meeting of the Addison’s Disease Self-Help Group (ADSHG) will be held on Sunday 18 November 2018 at 6pm at the Premier Inn, George Square, Glasgow.

    • 1,117 views
  38. 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. 

    -small-bsped-logo-banner_mauve.png

    • 699 views
Sign in to follow this  

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.

Get in touch

    Our Online Volunteers

  • pippa sharman
    pippa sharman
  • vsadler
    vsadler
  • annelben
    annelben
  • frances1
    frances1
  • suep1954
    suep1954

A dedicated team of volunteers contribute to and support the website, forum, shop, publications centre, video hub plus social media engagement on behalf of the charity.

×

Important Information

By using this website you are consenting to the use of cookies. Details about their use and how you can adjust your cookie settings are described in our cookie statement.