Data Collection & Your Privacy
If you have been a member with Global Hydranencephaly Foundation for some time, you are aware that in the past we had a full, family survey available. Due to the new General Data Protection Act that rolled out in early 2018, we nixed that form and all of that data that had been collected via those forms to comply with the international laws.
The information that we collect will be kept offline and shared only with those volunteers who must have the information to fulfill their commitment to GHF. Your name, your child’s name, date of birth, phone number, and address will be kept strictly confidential. Photos will be watermarked and edited to include our organization’s name so that we can protect those images when sharing around the web; double protection in the event a troll decides to use and share something that isn’t there’s to use.
How can you know for sure that your info is safe? Our founder & executive director, Ali Harper, has served her community in a variety of capacities: volunteer, corporate management, teacher, home business owner, and more. One of those commitments was as a command appointed ombudsman for the nuclear submarine, USS Maine SSBN-741, of the United States Navy. This position gave her the opportunity to receive training from both the Federal Bureau of Investigation and the Navy Criminal Investigation Service on a variety of topics, of which included internet security, ensuring privacy of data, homeland security, and confidential information management. She knows first-hand what concerns are lurking on the internet and beyond, as well as how to keep your data safe. In addition, I’m certain that you all are well aware that there is a very real threat to your children when sharing their stories and images online – rest assured that GHF will put in to place every precaution they are able to, to include Google alerts of photos and specific topics, to prevent this from happening to you.
As far as your personal contact information, this is used to communicate with you – birthdays, angel-days, information, awareness items, advocacy tools, care packages, and gifts will be sent to you during your journey with us. Later, it will be used to send you special project information. If you would, please be sure to update this information as you are able upon relocation or change of contact email/phone.
We appreciate your time and look forward to the opportunity to best support you on your journey in every way we can while also sharing your child’s journey with our audience while advocating for their rights and working to raise awareness of the possibilities that exist for a quality of life worth living.