Privacy Notice

The following is the Privacy Notice for the Advocacy for Neuroacanthocytosis Patients. It explains who we are and what we do with personal data that is collected from you and how it will be used and stored by us. This notice is prepared in compliance with the General Data Protection Regulation (“GDPR”).

Who We Are

The Advocacy for Neuroacantocytosis Patients (“the Advocacy”), through personal contact and a newsletter, supports patients with neuroacantocytosis (“NA”) and their families and caregivers around the world. The Advocacy is an important initiator and financial supporter of education including research into the clinical and basic science of these neurodegenerative diseases.

We are a charity registered in England and Wales. Our registered charity number is 1133182 and our company limited by guarantee number is 0700003.

What Personal Information We Collect

Personal data may be collected from you in order to carry out the functions of our charitable organisation. If we request this information, we will let you know how we use it by referring you to our Privacy Notice.

We collect personal data that you may provide to us about you, your family and/or your caregiver when you interact with the Advocacy in relation to:

  • Funding or research grant applications;
  • The Glenn Irvine Prize;
  • Receiving or contributing to our newsletter;
  • Your participation in events that we sponsor, such as NA symposia and fundraising events;
  • The NA Patient Registry;
  • Patient stories that you share with us;
  • Questions or feedback you send us by post or email or by visiting our website or through social media such as Facebook;
  • Volunteer and employee applications including CVs and professional activities;
  • Donations and other forms of fundraising;
  • Phone calls or personal meetings between you and us; and
  • Details obtained as a result of correspondence between you and us.

Please note that we also may collect information indirectly from you through a third party, for example, if you are a researcher your information may be shared with us through a principal investigator or institution.

Personal Information We Collect from You May Include:
  • Your name, title, gender, nationality and date of birth and other personal information as required as part of your relationship with the Advocacy;
  • Your contact details including your residence address and country of origin, email address and landline/mobile phone number;
  • Information necessary to process a grant or research funding, employment or volunteer application;
  • Your bank details, in order to process a payment or donation to us;
  • Information concerning your health, if you share personal medical information with us;
  • Other personal information that you volunteer to us or give to us at our request, which may include your story, your reflections on NA, current interests and activities, etc.; and
  • Details of your declaration, if Gift Aid is applicable, to any donation that you make (UK).
What We Do with Your Information

In order to fulfil the mission and responsibilities of the Advocacy, we will, for certain Advocacy purposes, ask for your consent before using your information. We may use your information where we have a legitimate interest to do so, such as in the assessment of research grant applications. Personal information will be processed fairly and in accordance with data protection principals. When consent is required to use the personal data of a child under the age of 18, the consent of the parent or of a person with parental responsibility will be requested at the time of collection.

The use of your information will depend on your relationship with the Advocacy and preferences that you have indicated and may be used by us for the following purposes:

  • To inform you of scientific research and grants and how you may participate;
  • To provide news and updates about the Advocacy and NA through our newsletter, on our website and social media and messaging services;
  • To send you information about the Advocacy by post, telephone or electronic means. These types of communications may include information on upcoming events such as our symposia, information on our fundraising activities whereby we may request that you consider giving financial or other support to our charity and other relevant communications;
  • To fulfil any requests that you make to us and to communicate with you with respect to those requests;
  • To process donations, direct debit and Gift Aid confirmations and thank you cards;
  • To process grant or funding requests;
  • To administer the Glenn Irvine Prize;
  • To provide information for the NA Patient Registry;
  • To inform you of NA related research and how to participate;
  • To process volunteer and employment applications;
  • To prepare annual reports;
  • To comply with legal obligations such as contracts between us, governmental and regulatory requirements and to protect our rights;
  • For data screening and cleansing so that we may check if we have accurate contact details for you; and
  • To further our charitable aims and objectives.
Who We Might Share Your Information with

We do not disclose personal data to any third parties or external organisations other than to carefully selected and trusted persons or organisations if a disclosure of information is necessary in connection with your relationship with the Advocacy and preferences that you have indicated.

These third parties or external organisations may include staff and volunteers, those who provide services on our behalf, scientific researchers, assessors of research grants, and InvestMyCommunity. We may also disclose personal data if required to do so by law.  We will not share your data for commercial purposes. Personal data may be shared with third parties outside the European Economic Area (EEA) in relation to research activities or in our newsletter. These countries may not have similar data protection laws to those of the UK. However, third parties will be instructed and contractually bound to handle any shared personal data in accordance with the GDPR and the provisions stated in this Privacy Notice.

How Long Do We Keep Your Information?

We will only keep your personal data for as long as it is necessary for the purpose it was collected for. Once the information is no longer required, appropriate steps will be taken to insure that paper files are destroyed and digital files are deleted.

How We Keep Your Information Safe

We employ the appropriate level of security measures to insure the safety of your personal data from unauthorised access, use or disclosure. This information is held in both digital and paper files. Our employees, volunteers and data processors have been instructed on their obligation to maintain the confidentiality of those providing us with their personal data including that of patients, patient families and caregivers. Although we strive to protect all data given to us, we cannot ensure the protection of information transmitted through the use of the Internet with respect to loss, misuse or alteration.

Sensitive personal data that we may collect when we speak to you or when you contact us, such as information on health, genetics and sexual life, requires additional protection pursuant to the GDPR and will be kept separate from other information. We may also contact patients, their families and/or their caregivers with which we have an outstanding relationship to ask about their personal story and if they wish to share it on our website and/or social media or other media platforms. If you consent to this we will keep your story on file for as long as it is necessary for the purpose it was collected for. You may withdraw your consent to use your story by contacting us.

How Can I Access the Information about Me And Correct Or Delete Information?

You may ask us for a copy of any personal data that we hold about you by making a Subject Access Request. To make a Subject Access Request you will need to provide adequate proof of identity such as a copy of your passport, birth certificate or driving licence before your request can be processed. You may also be asked to pay a nominal fee of up to £10 in order for us to process your request.

Once we have received your Subject Access Request, the agreed fee and proof of identity, you will receive a response from us within 40 days and you will be able to get copies of any information we hold on you. However, exemptions to disclosure may apply in some circumstances.

Subject Access Requests should be sent to:

Advocacy for Neuroacanthocytosis Patients
39 Coleherne Court, The Little Boltons, London SW5 0DN


You may request that any of your personal information held by the Advocacy be deleted or corrected. You may also withdraw consent given pursuant to this Privacy Notice by simply contacting the Advocacy at

You may choose to discontinue receiving our newsletter by clicking on the “Unsubscribe” link located on the bottom of our newsletter or from any of our mailings by contacting us at

If you have concerns about the way the Advocacy has handled your information, you have the right to lodge a complaint with the Information Commissioner’s Office (ICO). They may be reached by phone at 0303 123 113 or online at


In order to make the Advocacy website easier to use and improve our service, we sometimes place small text files, also known as cookies, on your computer. The cookie does not collect or contain personal information about you but allows you to move around our website and use its features and records your use of our website. You may adjust the settings on your computer to decline or delete any cookies.

Changes to Our Privacy Notice

We regularly review our privacy notice, and may make changes from time to time and as necessary. Any changes made will be posted to this page and will apply from the time we post them. This privacy notice was last changed on 24th November 2022.

The next planned review of this notice is November 2023.