Privacy Policy

Who we are

Rare Army is a US-based public benefit corporation registered and approved by the IRS as a 501(c)(3) charity. While we welcome and hope to inform all visitors, our primary target is individuals inside the United States.

Our website address is https://Rare.Army.

What personal data we collect and why we collect it

Rare Army respects individual privacy and values the confidence of its visitors, partners, and donors.

This Privacy Policy and Notice of Information Practices sets forth Rare Army’s practices regarding the collection, use, and disclosure of information that you may provide through this site. Please read this entire privacy policy before using this site or submitting information through this site.

By using this site and whenever you submit information through this site to Rare Army, you agree with the terms of Rare Army’s Privacy Policy and Notice of Information Practices written below.

Privacy Policy and Notice of Information Practices:

Data Manager

Dean Suhr is the data manager for Rare Army and acts as its Data Protection Officer. He can be reached at 

Data Collection

Rare Army seeks to Engage, Encourage, Educate, Equip, & Empower users to benefit the Rare Disease community. We serve the general public and rare disease families & patients. De-identified data, aggregated data, and with your permission identified data, may be shared to advance the quality of life for those living with rare disease, for rare disease awareness, and to inform the media, regulators, policymakers, clinicians, researchers, advocacy organizations, and biopharma.

We valued your privacy and data security, and while it is not required, we seek to be GDPR compliant as best we can.

Rare Army collects personally identifiable data such as your name, address, telephone number, and email address when you voluntarily submit it to Rare Army. This information may be used by Rare Army 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 Rare Army believes may be of interest to you. The data will not be transferred outside Rare Army without your prior consent but may be used within Rare Army or by a company acting as an agent of Rare Army for processing and mailing purposes.

Security & Web Hosting

Rare Army maintains the data collected in a secure electronic database hosted in the United States. Rare Army 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 Rare Army.

While Rare Army 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 Rare Army and entered into its local database, it has the same protection that Rare Army 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 Rare Army 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

As a convenience to our visitors, our pages may contain links to a number of other (non-Rare Army) sites that we believe may offer useful information. Since we have no control over those 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.


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. Our 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 the portions of our site that requires 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.

Please note that linked non-Rare Army sites may also use cookies. MLD Foundation cannot control the use of cookies by these non-MLD Foundation sites. We do not share cookie content with any other organization. 

Linking and Clicking to Other Sites

We also want you to know that when you link from our website to another website, that site may have the ability to recognize that you have come from our 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 paste the URL into your browser. * [Mac users should control click]

Third-Party Payments & Donation Processing

Rare Army uses well-recognized third parties such as PayPal to process credit card transactions for donations and processing fees. This is for your protection. These vendors use secure connections and have both electronic & physical security systems in place to protect your personal financial information. Rare Army is made aware of every transaction and its amount – but we do not have (and do not want) access to your credit card information. We will never ask you for your personal identifying access or password for these third parties nor will we ask for your credit card number. If you ever believe that we have asked for this information please write or phone us immediately as there is likely some sort of fraud underway.

Privacy Policy Updates

Any changes to the Rare Army Internet privacy policy will be posted on this page.

This privacy policy was last updated: 01-25-2020

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