Save the date:

 AGSD-UK Conference,
 Wyboston Lakes Executive Centre,  Bedfordshire. 
 20-21 October 2018


 GSD Camp (click here)

 Whitemoor Lakes

 Lichfield, Staffs.

 28-30 September 2018



Privacy policy


AGSD-UK is fully committed to protecting your personal information in accordance with the General Data Protection Regulation (GDPR) which came into force on 25th May, 2018. We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect.

This privacy policy explains how we may collect and use the information you give us.

Service information we provide includes updates about your Glycogen Storage Disease (GSD); research information on treatment and clinical trials; opportunity to take part in patient days and to attend our UK conference; and information about the help and support that may be available. Occasionally, we might invite you to participate in surveys to better understand the needs of people with GSD.

Our marketing communications include information about AGSD-UK publications and merchandise, news about progress in AGSD-UK funded research, updates on campaigns and fund raising opportunities.  

Where we collect information

We collect personal information in a number of ways.

When you give it to us directly: you may give us your information when you request specific information, in order to sign up for one of our events, make a donation or fill in the registration form.

When you give us information indirectly: your information may be shared with us by fundraising sites like Just Giving or Virgin Money Giving. They will only do so if you provide your consent to be contacted by AGSD-UK. These organisations will have their own privacy policies so please do ensure you understand this when providing your data.

When your information is available from other public sources: we may combine information you provide to us with information available from external sources in order to gain a better understanding of our supporters to improve our fundraising methods and services.

Based on your settings or the privacy policies for social media and messaging services like Facebook. LinkedIn and Twitter, you might give us permission to access information from those accounts or services.
Information available publicly may include information found in places such as Companies House and information that has been published in articles/ newspapers.


What information we collect

The type and quantity of information we collect and how we use it depends on why you are providing it.

If you support us, for example by making a donation, volunteering, registering to fundraise, signing up for an event or campaigning for us, we may collect where relevant:

  •    Your name
  •    Your contact details (full address, email address and phone number)
  •    Your date of birth
  •    Your bank details (if paying membership by standing order)
  •    GSD type and number of family members affected (where appropriate)
  •    Information relating to your health (for example if you are taking part in a high risk event) 


 How we use your information

We will mainly use your data to:

  •   Provide you with the services, products or information you asked for
  •   Provide you with information about Glycogen Storage Disease
  •   Administer your donation or support your fundraising, including processing gift aid
  •   Keep a record of your relationship with us
  •   Ensure we know how you prefer to be contacted
  •   Understand how we can improve our services, products or information.


If you would like to contact us about your contact preferences, our office team will be happy to answer any queries you may have.
Please write to us at AGSD-UK,
Old Hambledon Racecourse, Sheardley Lane, Droxford, Southampton SO32 3QY, email or call 0300 123 2790.


Asking for support
Occasionally we may contact you to let you know about campaigns we are running or to ask for donations or other support. If you don’t want to hear from us, that’s fine. Our forms have clear marketing preference questions and we include information on how to opt out every time we get in touch. Just let us know when you provide your data or contact us on 0300 123 2790 or email
We do not share personal details to third parties for the purposes of marketing.


Glycogen Storage Disease (GSD) care and information services
We need your details, including your condition or your link to a condition, to provide you with services, respond to your queries, or provide you with information relevant to your condition.
To send you relevant opportunities to get involved we use some of the information you provided, including age, gender, or your GSD of interest. We will use this information to make sure the views we hear are representative of all people affected by Glycogen Storage Disease.
Ethnic identity is occasionally collected because we want to make sure that our organisation responds to the needs of all communities. This information is only visible to the members of staff tasked with measuring our impacts in minority communities and developing peer networks.

Many of you are supporting Glycogen Storage Disease through your volunteering and by organising fundraising events. We will record your details and contact you to send you information relevant to your chosen voluntary activity.
Some people choose to tell us about their experiences of GSD to help raise awareness or funds. This may include them sharing sensitive information related to their health and family life in addition to their biographical and contact information.
If we have the explicit and informed consent of the individuals, or their parent or guardian if they are under 18, this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report.


Children’s data
We collect and manage information from or about children. Information is usually provided to us by a parent enquiring about their child’s condition; when children attend our events or fundraise for us.
All children under the age of 16 are excluded from our communications. Over 16 may receive information about GSD or how to support the charity.
Under 18s are excluded from receiving any information about raffles and lotteries.


How we keep your information safe

We place great importance on the security of your personal information and will always try to take appropriate precautions to protect it.

We ensure that there are appropriate technical controls in place to protect your personal details. For example our servers and network are protected and routinely monitored.

We always ensure only authorised personnel (staff, volunteers or contractors) have access to your information, and that they are appropriately trained to manage your data.

We may legally be required to disclose your details if required to by the police or for regulatory reasons. We will only ever share your data in other circumstances if we have your consent to do so.
We will only ever share your data in other circumstances if we have your explicit and informed consent.

How we keep your information up to date

Where possible, we try to keep your records up to date. However, we really appreciate it if you let us know if your contact details change. 

How long we keep your information for

We keep your personal information only for as long as required to operate the service in accordance with legal requirements and accounting rules. Where your information is no longer required, we will ensure it is disposed of in a secure manner.

Your rights to your information

You retain control of your data and you have the right to ask us to stop processing your personal information, which we will do if it’s not necessary for the purpose you provided it to us for (e.g. processing your donation or registering you for an event). In some circumstances, we may legally be required to retain your personal information for audit purposes. This will be discussed with you depending on your requirements. Please contact, or call us on 0300 123 2790 (Office hours, Monday to Thursday) if you have any questions or concerns.

You also have the right to ask for a copy of the information we hold about you. If you want to access your information, send a description of the information you want to see and proof of your identity by post to AGSD-UK, Old Hambledon Racecourse, Sheardley Lane, Droxford, Southampton SO32 3QY
We do not accept these requests by email so we can ensure that we only provide personal data to the right person. There is a small charge of £10 to cover the costs involved.

For further information see the Information Commissioner’s guidance. If you would like to make a complaint about how we process your personal data, please contact our office team by email at, by phone 0300 123 2790 (Office hours, Monday to Thursday) or by writing to Old Hambledon Racecourse, Sheardley Lane, Droxford, Southampton SO32 3QY.
If you are not happy with how your complaint is dealt with, you should contact the
Information Commissioner’s Office. Alternatively, you are entitled to make a complaint to the Information Commissioner’s Office without first referring your complaint to us.


Changes to this policy

This policy may change from time to time. If we make any significant changes in the way we treat your personal information, we will publicise these changes clearly on our website or contact you directly with more information.

If you have any questions, comments or suggestions, please let us know by contacting the please contact our office by email at, by phone 0300 123 2790 (Office hours, Monday to Thursday) or by writing to Old Hambledon Racecourse, Sheardley Lane, Droxford, Southampton SO32 3QY.

This policy was adopted by AGSD-UK on 9th June 2018
Date to be reviewed June 2019