Privacy Policy & Notice of Information Practices

Who we are

This website is a collective effort of the project organizers as listed on the home page,

You may contact us at

Data collection

When visitors leave comments and submissions on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help prevent spam.

Your submissions are stored in our server’s database using industry standard security and privacy processes. Our web host is Amazon Web Services, our platform is WordPress-based and your information may be captured by Gravity Forms or similar professional data software.

If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. If you grant permission to electronically re-use your images it may be possible to  extract embedded location data.

At any time, you may ask that your data be removed by contacting the Data Manager (see below). 

Embedded content and Links

Video streams, the live-access form, and other components of this site might be embedded from trusted third party sites.  

This site contains links to external sites that we believe may offer useful information.

Since we have no control over any of these sites, the privacy policy presented here does not apply to third party sites. You should contact these sites directly for information on their privacy policies, confidentiality agreements and data collection/distribution procedures.

Children's Policy

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.

Who we share your data with

The primary use of submissions you make on this site are to provide an aggregate assessment and understanding of the MLD Community. This aggregate data will be used to prepare a Voice of the MLD Patient report after the EL-PFDD meeting – this report will be made public.

Your submissions and contact information may be shared with the meeting organizers if you gave consented at the time of submission.

Your contact and personal information will never be shared with other external parties.   


Our website may use a technology called “non-persistent cookies,” which is a small data file that a server sends to your browser.  This file is used 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. 

Please note that linked external sites may also use cookies. We cannot control the use of cookies by these linked sites. We do not share cookie content with any other organization. 

We also want you to know that when you navigate from this site to another website, that site may have the ability to recognize that you have come from this site (this is true anytime you navigate 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 click on the links provided in our site – instead right click* to copy the contents of the link, go to a new page and then paste the URL into your browser. * [Mac users should control click]

Data retention, management, and GDPR

GDPR: Your data is stored on servers in the USA and is managed in a GDPR compliant manner.  You may ask for a copy of any data you submit and/or that your data be removed from our server(s) by contacting our Data Manager. This does not include any data we are obliged to keep for administrative, legal, or security purposes. Your data is store indefinitely.

Data Manager: Dean Suhr is the data manager for this site and acts as its Data Protection Officer. He can be reached at

We regularly back up our databases using commercial-grade software.  Backups are stored on an independent DropBox site. 

Data privacy, ownership, and usage

Your story and data will always be yours, however, all submissions (text, images, etc.) made to this site will be considered for use in the Voice of the MLD Patient report that will be shared with the FDA, researchers, and be made publicly available on this site.  

Most of the data in the report will be used in an aggregated fashion, however, since MLD is a rare disease it is possible some could piece together a connection to your family if you have been sharing other information publicly – on social media, for example.

We may ask for additional specific permission to use quotes and/or images from your submission to help personalize the report. You may decline our use of your information in this manner.

As described above, you have the right to have your data erased from our servers, however, if your data is not erased prior to aggregation for the report, it will remain in the report for perpetuity.