Privacy Policy


The Pompe Support Network takes your privacy very seriously and are committed to protecting your personal information. 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.

Some personal information about our stakeholders is essential to developing a better understanding so we can make better decisions and fundraise effectively.

Occasionally, we might invite members of the network to participate in surveys to better understand the needs of the Pompe community.

Our marketing communications include information about Pompe disease, news about current research, and updates on campaigns.

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, purchase our products, or when you communicate with us. We may work with a provider which will collect this information on our behalf, but please be assured we are still responsible for your data.

When you give us information indirectly: your information may be shared with us by independent event organisers, for example the London Marathon or fundraising sites like Just Giving or Virgin Money Giving. They will only do so if you provide your consent to be contacted by Pompe Support Network. These organisations will have their own privacy policy and/or privacy statements, 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 network to improve our fundraising methods, products and services.
You may have provided permission for other organisations to share your data with third parties, including charities. This could be when you buy a product or service, register for an online competition or sign up with a comparison site.
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.

When you are using our website: Like most websites, we use “cookies” to help us make our site better and easier to use. Cookies mean that a website will remember you. They’re small text files that sites transfer to your computer (or phone or tablet). They make interacting with a website faster and easier – for example by automatically filling your name and address in text fields.
The device you’re using to access our website may provide us with information about what type of device it is, what operating system it uses. Your device manufacturer or operating system provider will have more details about what information your device makes available to us.

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 or credit card details
  • Information relating to your health
  • Why you have decided to donate to us

Where it is appropriate, we may ask if you have an interest in a Pompe disease and what your link to this condition is.

Occasionally, we may ask and record the ethnic group you belong to.

We may also ask you for the name of your employer.

How we use your info

We will mainly use your data to:

  • Provide you with the services, products or information you asked for
  • Provide you with information about Pompe 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 marketing preferences, we will be happy to answer any queries you may have. Please write using the contact details given at the end of this policy.

Building profiles of community members and targeting communications

We may look at how you have previously interacted with us to guide us on how you like to interact with us and the kind of support that you have a preference providing.
We may analyse your personal information to create a profile about you, your interests and preferences. In doing this, we look for other information about you in addition to what you have given us, for example, from public records or social media.
This helps us make sure we send appropriate communications to our supporters, using our resources more effectively as well as helping us to improve the quality of our supporters’ experience with us.

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. Just let us know when you provide your data or contact or call us on 01730 231554. Please get in touch if you have any questions or concerns.
We do not share personal details to third parties for the purposes of marketing.

Some employers also provide charitable support and we may also ask to approach them on our behalf.

Pompe disease 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.
We use some of the information you provided, including age or gender to send you relevant opportunities to get involved. We will use this information to make sure the views we hear are representative of all people within the network.
Ethnic identity is occasionally collected because we want to make sure that our organisation responds to the need 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.
Medical, personal, financial information you give is not kept with the main database and is only available to the team in charge of this work.


Many of you are supporting the Network through your volunteering. Some sit on committees or organise 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 Pompe disease to help raise awareness or funds. This may include sharing sensitive information related to health and family life in addition to 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 Pompe disease; 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 Pompe disease or how to support the Network.

How we keep your info safe

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

We ensure that there are appropriate technical controls in place to protect your personal details.

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 do use external organisations that collect and/or process personal data on our behalf. Before working with these companies, we perform rigorous checks to ensure they meet all relevant regulations and legislation.

We always implement a contract with our suppliers, which imposes robust data protection requirements, including the provisions of this policy, and seeks to provide maximum protection of your personal details.

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 info up to date

Where possible, we try to keep your records up to date; for example, using the Post Office’s National Change of Address database. However, we really appreciate it if you let us know if your contact details change.

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.

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 to the contact details given at the end of this policy.

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 the Pompe Support Network, using the contact details at the foot of this policy. 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.

Contact Details

If you have any questions, comments or suggestions, please let us know by contacting our leadership team by email at, by phone 01730 231554, or by writing to Pompe Support Network, 43a North Lane, Buriton, Petersfield, GU31 5RS.