PMSFUK - Phelan McDermid Syndrome Foundation UK

Data 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 our website and in our 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.


Sharing data

We share family contact lists amongst the Trustees and Regional Reps for our UK/Ireland PMS community, and will refrain from sharing any family’s details if they do not want to be shared in this way.


Our data is shared with the international Phelan-McDermid Syndrome Foundation based in the USA (referred to here as ‘the international PMSF’), and we are dependent on new families joining PMSF UK being advised to us through the international PMSF.


Our website also contains links to the international PMSF site. Upon leaving the PMSF UK site, the data controllership passes to the international Foundation. Similarly, if you go to another website from ours, read the privacy policy on that website to find out what it does with your information.


We will seek agreement from families before sharing their data with other related charities, partner organisations or research projects.


We do not share our data with other organisations without seeking agreement from the families involved. We will not sell data to other organisations or allow it to be used for marketing purposes.


How long we keep the data

We retain data for as long as families are happy for us to do so. We will remove or alter data at families’ request.


Our responsibilities

We make efforts to keep personal data secure, through sharing it only with the required group of trustees / volunteers in a secure way. We will use our best efforts to protect data from loss, misuse or alteration.


We also share the list of PMS families with our regional reps and, by agreement, with the PMS community.


Awards information is shared only with trustees as required to make decisions on applications.



You have the right to request information about how your personal data is processed, a copy of that personal data, or that anything inaccurate in your personal data is corrected immediately.


You can also raise an objection about how your personal data is processed, request that your personal data is erased if there is no longer a justification for it, or ask that the processing of your personal data is restricted in certain circumstances


Contact us or make a complaint

If you would like to contact us to understand how we use your data, or if you think that your data has been misused or mishandled, contact us via email ( or at our postal address


PMSF UK, 99 Highgate West Hill, London N6 6NR.

The trustees will respond to you directly.


Should you require further escalation, PMSF UK is a registered charity with the UK Charity Commission. Details can be found at:


Changes to the policy

The policy is published on the PMSF UK website, and any revisions to it will be notified through both the website and the PMSF Annual Report. PMSF UK may also draw attention to changes in regular communications to families and supporters.