Data Policies

PMSF  Data Privacy and Data Protection Policy

Who we are

PMSF is a registered U.S. charity whose aims are to support people with Phelan-McDermid Syndrome and their families. A fuller set of objectives is published on the foundation’s website and incorporation papers.

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 across the globe

2)     To process applications for scholarship awards during biennial conference years

3)     To receive and track orders and payments for PMSF merchandise

4)     To track usage of our website

5)     To communicate with donors

6)     To communicate with volunteers and other supporters of PMSF

7)       To collect genetic and other medical reports for a genetic registry of PMS affected individuals in order to support research and clinical trials

We seek to capture and hold data only as needed to carry out our business as a not-for-profit serving people and families impacted by Phelan-McDermid Syndrome.

1) The data we collect directly relates to families with PMS who are registered with the international PMSF and/or the PMS International Registry.  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.

2) For families applying for scholarships, we also capture data via an application form, including income tax and wage information,  so that awards can be paid.

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 QGiv and Bloomerang. We use that data to recognize and thank donors (where they have said that they are happy to be contacted by us) and to keep them informed of our work.

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 with staff, Global Partners and regional reps for our PMS community, and will refrain from sharing any family’s details if they do not want to be shared in this way.

Our website also contains links to the other international PMSF sites. Upon leaving the PMSF site, the data controllership passes to the specific foundation abroad. 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 organizations or research projects.

We do not share our data with other organizations without seeking agreement from the families involved. We will not sell data to other organizations 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 board members/staff / 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.

Scholarship information is shared only with staff 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 be 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

200 Capri Isles Blvd., Suite 7F
Venice, Florida, 34292, USA


Changes to the policy

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

PMSF | Phelan-McDermid Syndrome Foundation