Privacy Policy
The Phelan-McDermid Syndrome Foundation (PMSF) is a registered U.S. charity whose aims are to support people with Phelan-McDermid syndrome and their families. A complete set of strategic goals is published on this website and in incorporation papers.
Data We Collect And How We Use It
We seek to capture and hold data for 7 main reasons, and only the data that is needed to carry out our business as a not-for-profit organization serving people and families impacted by Phelan-McDermid syndrome:
We communicate with families across the globe that are registered with the Phelan-McDermid Syndrome Foundation (PMSF).
The data we collect directly relates to families with Phelan-McDermid syndrome who are registered with the PMSF and/or the Phelan-McDermid Syndrome Data Hub. It includes family names, addresses, email details, and age / DOB of the person with Phelan-McDermid syndrome. 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 upcoming events and fundraisers.
We process applications for scholarship awards during biennial conference years. The application form includes income tax and wage information so that awards can be granted.
We process orders for PMSF merchandise. The merchandise orders include information that is used to validate payments and expedite shipments as required.
We track usage of our website by capturing IP addresses via Google Analytics. We use the data to understand usage patterns as we seek to make the website more user-friendly and effective.
The Phelan-McDermid Syndrome Foundation (PMSF) is committed to respecting the privacy of our donors. All information concerning donors or prospective donors (including their names, physical addresses, email addresses, telephone numbers, and the amount of their gift, etc.) shall be kept strictly confidential by Phelan-McDermid Syndrome Foundation and its staff and board. PMSF stores donor information in a password protected donor database and uses donor data to maintain records of donations, send acknowledgements, send e-newsletters, and various other fundraising campaigns and appeals. At time of donation, donors may opt out of receiving future solicitations from PMSF.
Any outside contractors/consultants must be given express permission from the Phelan-McDermid Syndrome Foundation’s Chief Executive Officer to access donor information, are contractually obligated to treat donor information with confidentiality, and are prohibited from transferring donor information elsewhere. Contractors/consultants will be required to sign a confidentiality agreement and disclose any conflicts of interest. Use of donor information will only be used to further the mission of PMSF. Phelan-McDermid Syndrome Foundation will not sell, rent, trade, or transfer your personal information to outside organizations. If you have comments or questions about Phelan-McDermid Syndrome Foundation’s donor privacy policy, please email info@pmsf.org or call 941-485-8000.
To communicate with volunteers and other supporters of the PMSF, additional information may be held as needed e.g., details of an event they are assisting with or attending.
We collect genetic information and other medical reports for the PMS DataHub to support research and clinical trials