MLD Foundation respects individual privacy and values the confidence of its visitors, partners, and donors.
Dean Suhr is the data manager for MLD Foundation and acts as its Data Protection Officer. He can be reached at
MLD Foundation is a health oriented Foundation and serves families, clinicians, researchers, pharmaceutical and biotech companies, legislators, regulators, academia, and the media around the world. De-identified data, aggregated data, and with your permission identified data, including medical and genomic data, may be shared across these entities to advance the quality of life for those living with MLD and for MLD awareness.
We have always valued your privacy and data security. Our policies, other than the two paragraphs above which were added in May 2018, were substantially GDPR compliant as written in 2002.
MLD Foundation only collects personally identifiable data such as your name, address, telephone number or email address when you voluntarily submit it to MLD Foundation. This information may be used by MLD Foundation personnel as a means to contact you to obtain more information, to improve this site, or it might be used to provide you with information that you have requested or additional information which MLD Foundation believes may be of interest to you. The data will not be transferred outside the foundation without your prior consent, but may be used within MLD Foundation or by a company acting as an agent of MLD Foundation for processing and mailing purposes.
MLD Foundation maintains the data collected in an electronic database of voluntarily submitted personally identifiable information. MLD Foundation and its agents may exchange such information with each other or with you over the Internet or intranet systems for the purposes of carrying out the purposes of the Foundation.
While MLD Foundation makes every reasonable effort to protect the information collected through its web sites, please be aware that there is always some risk involved when submitting data over the Internet. We cannot guarantee that our website is 100% safe from illegal tampering or “hacking.” Any data transmitted over the Internet may be at risk; however, once it is received at MLD Foundation and entered into its local database, it has the same protection that MLD Foundation extends to its own confidential information.
We track the total number of visitors to our website, the number of visitors to each page of the website, and the domain names of our visitors’ Internet service providers. No personally identifiable information is gathered in this process.
Updating Your Information
If at any time you wish to stop receiving emails or other communications from us, or if you have submitted personally identifiable information through our website and would like to have that information deleted from our records, please notify us. You may also request access to personal data about you that MLD Foundation holds and you may have the opportunity to request a correction or amendment to your personal data. As a reminder to you when exchanging emails, any email that you send or receive on your employer’s email system may be the property of your employer. Consequently, your employer has the ability to review your personal information sent via email.
Links to Third Party Sites
When you post to a MLD Foundation sponsored discussion list your e-mail address may made visible to the other list members. However, if you simply read discussion list or announcement messages your e-mail is not revealed.
Information shared on the discussion lists is not to be shared with any personally identifying information off-list. We require that all list participants honor this confidentiality. While we cannot and do not expect that all communications between discussion list members be on the list – it is preferred that you share on list. This builds rapport, trust, and allows other to both benefit from and contribute to your experiences. MLD Foundation cannot be responsible for any communications that are made directly between discussion list members.
Archives of discussion lists may be posted on one or more MLD Foundation sponsored web sites in the future. We will endeavor to see if the technology is available when these archives are made available to prevent your e-mail address from being made visible in the archives. We cannot make that promise yet as the technology is not in place. These archives might be “indexed” and made available to one or more search engines. (Go to www.google.com and enter your name – you might be surprised what comes up!)
Our website is not intended or designed to attract children under the age of 13. We do not collect personal information from any person we actually know is a child under the age of 13.
Our website may use a technology called “non-persistent cookies,” which is a small data file that a server gives to your browser and is stored on your computer when you access our website in order to let you access the pages you request and to track the pages visited. Using non-persistent cookies to track page visits helps us analyze our site usage more accurately. In cases in which non-persistent cookies are used, we will not collect personally identifiable information except with your explicit permission. “Non-persistent” cookies usually expire when you leave the site or within a small number of hours.
We are experimenting with an optional “persistent cookie” to make your visit to our site more efficient by recording that you have been to our site before and any preference information that you explicitly provide to us. MLD Foundation sites will be designed to work without using these options “persistent cookies”. These small files are stored on your computer and usually expire after a period of months.
In MLD Foundation sites that require passwords, we may offer you an option to use a “persistent cookie,” to store your user id and password to ease your access to the site. You should only allow these cookies if your computer is not shared or publicly accessible. This file is stored on your computer, and enables your browser to access each page that is in the password-protected area. We will not store your password in the cookie unless you explicitly allow us to.
We also want you to know that when you link from a MLD Foundation website to another website, that site may have the ability to recognize that you have come from a MLD Foundation site (this is true anytime you go from one site to another on the Internet and is not a function of any software that we run). If you do not want any other websites to know that you have been on this website, we recommend that you do not use the links provided in our site – instead right click* to copy the contents of the link, go to a neutral site and then past the URL into your browser. * [Mac users should control click]
WordPress, Hosting, Databases
This site is built using WordPress, the world’s most widely used hosting platform. Our web, email, messaging, and database servers are currently hosted by Amazon Web Services. Our databases are a combination of MySQL and FileMaker – both hosted at AWS and FileMaker on a dedicated MLD Foundation server. The MLD Patient Powered Registry is managed and hosted by
We use secure passwords, basic security monitoring, 3rd party tools, and where appropriate, IP restrictions to limit access to our online information.
We have limited the staff and volunteer access to private information and continually trained them on how to avoid both social and direct phishing techniques.
With that said, we are only as secure as our tools and 3rd party vendors enable us to be. It is a battle and balance between increasing security, enabling access, and keeping up with the ever changing hacking/phishing technique landscape.
Third Party Payments & Donation Processing
MLD Foundation uses well-recognized third parties such as PayPal, Stripe, Apple,
17-Aug-2019 … added additional payment processing partners and the “WordPress, Hosting, Databases” sections.
25-May-2018 … added the Data Manager and a few minor clarifications for GDPR compliance (we apparently were 16 years ahead of GDPR in our data management approaches).
Prior to that, the last revision was 10/13/2002