PMSFUK - Phelan McDermid Syndrome Foundation UK

Privacy and Data Protection Policy

Who we are

PMSF UK is a registered UK charity whose aims are to support people in the UK and Ireland with Phelan-McDermid Syndrome and their families. A fuller set of objectives is published on the charity’s website and in its constitution document.

What data we collect and what we use it for

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 track usage of our website
5) To communicate with donors
6) To communicate with volunteers and other supporters of the charity
We seek to capture and hold data only as needed to carry out our business as a charity and to meet our charity’s aims.
More details are provided below.
1) The data we collect directly relates to UK / Ireland families with PMS who are registered with the international PMSF. It includes family names, addresses, email details and age / DOB of the person with PMS.
By its nature, this includes information about children and vulnerable adults. In each case, we seek to capture the consent of the guardian or responsible adult before we capture this information.
We use the data to communicate with families, for the purposes of providing support and information, including up-coming events and fundraisers.
Note: We also encourage families to join the international database PMSIR (Phelan-McDermid Syndrome International Registry) but, as a UK charity, we do not control or have access to that data. Please refer in that instance to the PMSIR directly.
2) For families applying for awards, we also capture data via an application form, including bank account details, so that awards can be paid.
Note: Families receiving awards may be asked their permission to share their experiences within the community. No further details will be shared without permission being granted.
3) Merchandise orders are captured and the information used to validate payment and expedite shipment as required.
4) We capture data (IP addresses) via Google analytics to track use of our website. We use that data to understand usage patterns as we seek to make the website more user-friendly and effective.
5) We access data in relation to fundraisers / donors, primarily through donation sites such as JustGiving and Virgin Money Giving. We use that data to recognise and thank donors (where they have said that they are happy to be contacted by us) and to keep them informed of our work. With donors’ agreement, we may also use the
information to reclaim GiftAid.
6) Further details may be held of volunteers and supporters as needed – e.g. to share details of an event where they are attending or assisting.

Our details

Our business’s name is: Phelan-Mcdermid Syndrome Foundation UK
Our business address is: 99 Highgate West Hill, London, N6 6NR
Our contact details are: