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Privacy policy

Data privacy and data protection policy of the Phelan-McDermid Syndrome Foundation UK.

Who we are

PMSF UK is a registered UK charity (no. 1157423). Our aim is to support people with Phelan-McDermid Syndrome in the UK and Ireland, and their families. A fuller set of our objectives is on our mission page and in our constitution.

What data we collect and why

We collect and hold data for six main reasons:

  1. To communicate with registered PMS-affected families in the UK and Ireland.
  2. To process applications for financial awards from registered families.
  3. To receive and track orders and payments for PMSF UK merchandise.
  4. To understand how our website is used.
  5. To communicate with donors.
  6. To communicate with volunteers and other supporters of the charity.

We only collect and hold the data we need to run the charity and meet its aims. More detail follows.

1. Families

The data we collect relates to UK and Ireland families with PMS who are registered with the international PMSF. It includes family names, addresses, email addresses, and the age or date of birth of the person with PMS.

This includes information about children and vulnerable adults. In each case we ask for the consent of the guardian or responsible adult before we record it.

We use the data to communicate with families, to provide support and information, including upcoming events and fundraisers.

We also encourage families to join the international PMS DataHub (formerly the Phelan-McDermid Syndrome International Registry, PMSIR). As a UK charity, we do not control or have access to that data. Please contact the DataHub directly about it.

2. Awards

For families applying for awards, we also collect data through the application form, including bank account details, so that awards can be paid.

Families receiving awards may be asked for permission to share their experiences within the community. No further details are shared without permission.

3. Shop orders

We record merchandise orders and use the information to confirm payment and send your order. Card payments are processed by Stripe; we do not see or store your full card details.

4. Website use

This website does not use advertising or tracking cookies. Our website host, Cloudflare, processes technical data such as IP addresses to deliver the website and keep it secure.

5. Donors

We receive information about fundraisers and donors mainly through donation websites such as JustGiving. We use it to thank donors (where they have said they are happy to be contacted) and to keep them informed of our work. With donors' agreement, Gift Aid is claimed on their donations.

6. Volunteers and supporters

We may hold further details of volunteers and supporters as needed, for example to share details of an event they are attending or helping at.

Sharing data

We share family contact lists among the trustees and regional reps for our UK and Ireland PMS community. We will not share a family's details in this way if they do not want us to.

Our data is shared with the international Phelan-McDermid Syndrome Foundation in the USA ("the international PMSF"). We rely on the international PMSF to tell us about new families joining PMSF UK.

Our website links to the international PMSF website. Once you leave our website, the international Foundation is responsible for your data. The same applies to any other website you visit from ours: please read its privacy policy.

We will ask families before sharing their data with other related charities, partner organisations or research projects. We do not share our data with other organisations without the agreement of the families involved. We will never sell data or allow it to be used for marketing.

How long we keep data

We keep data for as long as families are happy for us to do so. We will remove or change data whenever a family asks us to.

Our responsibilities

We work to keep personal data secure, sharing it only with the trustees and volunteers who need it, in a secure way. We do our best to protect data from loss, misuse or alteration.

We share the list of PMS families with our regional reps and, by agreement, with the PMS community. Awards information is shared only with the trustees who decide on applications.

Your rights

You have the right to ask how your personal data is used, to have a copy of it, and to have anything inaccurate corrected immediately.

You can also object to how your personal data is used, ask for it to be deleted if there is no longer a reason to keep it, or ask for its use to be restricted in certain circumstances.

Contact us or make a complaint

To ask how we use your data, or if you think your data has been misused or mishandled, email info@pmsf.org.uk or write to PMSF UK, 99 Highgate West Hill, London, N6 6NR. The trustees will reply to you directly.

If you need to take it further, PMSF UK is registered with the Charity Commission: complain about a charity (GOV.UK).

Changes to this policy

This policy is published on our website. We will announce any changes on the website and in the PMSF UK annual report, and may also mention them in our regular messages to families and supporters.