Addison's Disease Self-Help Group News Alert

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25 May 2018

ADSHG Special News Alert

Welcome to a special edition of the Addison's Disease Self-Help Group News Alert, to explain changes to the way ADSHG maintains its member database, how the 2018 subscription rates affect Standing Order subscribers, and how the charity is preparing for new personal privacy regulations which come into force on 25 May 2018 under the EU General Data Protection Regulations.

ADSHG has a new member management service


ADSHG’s long-time membership contractor, former trustee Noel Hawks, has officially retired from his duties and handed over responsibility for keeping our member records up to date to a new external service provider, Lee Harper Holt. This is a small, friendly firm based in Kirbymoorside, headed by Jane Harper with support from Fiona Butler. Nick Willson, also a former trustee and the group's WebMaster, is also winding back his involvement with our membership records.
Lee Harper Holt is open 9 – 5 weekdays and can be contacted on: If you have an urgent enquiry about your membership status, there is also a telephone line: 0300 121 0312*.

Noel and Nick are both active members of ADSHG and remain on hand to provide guidance and advice to Jane and Fiona – but Noel is no longer managing the day-to-day updates to our member records. ADSHG is grateful to Noel for his many years of dedicated and conscientious service, for which the trustees offer very sincere thanks.
*Calls should cost no more than a national rate call (a standard UK geographic landline - 01 or 02 number) or should count towards any inclusive minutes when calling from a mobile phone - in the same way as 01 and 02 numbers.

About your personal records

All the information that ADSHG holds about its members, including payment and Gift Aid records, is maintained in a secure, web-hosted database managed by an independent technology company, Advanced Business Solutions. This information – other than Gift Aid records – is duplicated in the ADSHG members’ area in an individualised record that is confidential to you. You can view your online account profile within the members’ area of the website, including your recorded communication preferences, as to whether you wish to receive email communication from ADSHG or only the postal newsletter.

Please take a moment to check that your account profile is up to date, and that your preference for receiving email communication from ADSHG through email News Alerts has been correctly recorded in the tick box listings under your account profile.

If you tick this box we will also send you email Alerts about social meetings local to you and national events such as the AGM and medical lecture. If you wish to receive email notices a
bout meetings but don’t have a personal email address, you can nominate a family member to receive these email Alerts for you.

You can read more about the ADSHG's approach to data protection and how it stores your  information in the Privacy Policy on the main website.

Remember to check your Shop account


ADSHG maintains Shop account records separately from its member records, to ensure customer privacy. This means that if you change your email or postal address, you will need to update your contact details in the Shop account separately from your online member profile. Before you place an order, please take a moment to check that your billing and shipping address records are correct.

How to add an email address to your ADSHG record

Anyone who has only recently got an email address can register online to access the member-only areas of the website. Register here by completing the contact information, selecting your membership payment type e.g. Standing Order, and clicking proceed. A validation email will be sent to you automatically.

If you wish to receive email News Alerts and meeting notices, but don’t want to register online, you can notify ADSHG of your email address and communication preferences on

About ADSHG online surveys
ADSHG online member surveys are conducted through SurveyMonkey and the individual data they contain is held separately in this firm’s secure, externally-hosted database. SurveyMonkey guarantees to meet all GDPR standards for data protection and privacy, as you can read on this link.
ADSHG uses SurveyMonkey for polls such as proxy votes towards the Annual General Meeting, where members are requested to supply personal identifiers that could be cross-matched against their member records within the ADSHG database. This would be done were the charity ever required to prove these were genuine voting records.
ADSHG surveys that ask about health-related issues, such as the current adrenal survey, are conducted on a confidential, basis and do not ask for personal identifiers such as date of birth, email or other address details.
The 2018 adrenal survey is still open for further replies. If you have not already done so, please complete this confidential survey on living with adrenal conditions. It takes about 10 – 15 minutes, and the insights you offer could help others in future. Some early findings from this survey have already been presented at the European Congress for Endocrinology 2018 in a scientific poster. Your contribution can help to improve patient safety and medical awareness for the future.
2018 subscription rate rises: Standing Order arrears
As part of the handover, Jane and Fiona have audited all ADSHG member records and have updated payments records against the new 2018 subscription rates. Over the next few months, they will contact those who are in arrears on a Standing Order to explain how to top up your payment to ADSHG to meet the 2018 rates. There is no need for you to take action straight away.
E-members who paid their 2018 subscription by Standing Order at the 2017 rate of £15 now owe £1 in arrears. The easiest way to pay this is to use the £1 donation button in the web Shop and email a copy of your receipt to
Postal Standing Order members who paid £17.50 will be invited to take out a Direct Debit for £19 and offered a refund. If they wish to continue to pay by Standing Order, they will be invited to arrange payment of the £4.50 arrears.
Everyone who pays by Standing Order will be recorded as a current subscriber and can use their online Shop account to pay their arrears. However, we are aware that some Standing Order subscribers were automatically lapsed by the software systems the charity uses on its website, so that some members have found themselves locked out when they tried to log in to the members’ area. ADSHG apologies sincerely for this inconvenience; we very much value your support and ask for your patience while we resolve these anomalies.
If you have found yourself locked out of the members’ area or your Shop account, please contact Jane and Fiona so they can adjust your records to allow you back in. Please quote your membership number, if you can, so they can locate your records more swiftly.
Increased website security
The website has always encrypted member registrations, sign-in and shop checkout processes. In late 2017, security was enhanced by encrypting everything through https://. A padlock symbol is now present (in the toolbar) for every webpage, signifying that that your data is encrypted and kept private as it traverses the Internet.
AGM and medical lecture reminder
The ADSHG’s medical lecture and AGM takes place in London on 30 June 2018, 1.45-5pm. Dr Robert Murray, Honorary Associate Professor at Leeds Teaching Hospitals NHS Trust will speak about findings from a long-term EU-AIR study on quality of life in adrenal patients on steroid therapy. 

Afternoon tea and the chance to practice your injection technique after the lecture, at around 4pm. Map and directions to the venue on this link.

Buffet sandwich platter lunch at £6 available from 12:30; only available on pre-purchased tickets from the online Shop. Lunches must be ordered by Wed 20 June to meet the caterer’s schedule. The ground floor café has a wider range of salads and hot meals for those who prefer. 

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

There will be two special interest satellite sessions ahead of the lunch from 11:30 – 12:30, supported by an endocrine nurse. This is a chance to chat and share experiences with others about:
You can check details of this event in the online calendar. We look forward to seeing you there.
View and update your account profile
Remember, you can read the most recent ADSHG newsletter, the spring 2018 edition, in the Publications centre of the ADSHG website. Log in to receive access to this and to our exclusive members' only Living Well section. 

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

Best wishes
Katherine White and Nick Willson - on behalf of the editorial team
Copyright © 2018. Addison's Disease Self-Help Group, All rights reserved.

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Addison's Disease Self-Help Group · Starling House · 1600 Bristol Parkway North · Bristol, BS34 8YU · United Kingdom

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