To safeguard your privacy, The Siegel Rare Neuroimmune Association (SRNA) has adopted the following privacy policy for this Website: The Siegel Rare Neuroimmune Association (

Please also read The Siegel Rare Neuroimmune Association’s Website Terms of Use.


SRNA collects information from you when you voluntarily provide it to us or use our website.

Information Voluntarily Provided To Us

Our membership forms, event sign-up or registration forms, blog subscription forms and Myelitis Help Line request users to give us personal information (like their name, email, and postal address) and information about their health.

We greatly appreciate your willingness to provide this personal information. We believe this information will help doctors better understand rare neuroimmune disorders and people who have been diagnosed with them.

The information shared with us will not be made public at any time without your permission.  Data we collect may be analyzed as de-identified data and only aggregate results reported and used to learn more about the disorder and make reasonable conclusions about the population that may be helpful in designing registries and clinical trials. SRNA does not share or sell patient data and other confidential information with third parties for any purpose.

Contact information from the forms is used to send information, updates and knowledge about our organization and the disorders we advocate for to you. The member’s contact information is shared with other members and support group leaders only if users have opted for sharing.

Users may opt-out of receiving future mailings or ask to have their membership information removed at any time; see the choice/opt-out section below.

We also collect information from you when you make a donation to SRNA. This includes your name, email and postal address, telephone number, and payment details, like credit card information. This information is used to process credit card payments through a third-party contractor and when we connect with you to send confirmations and receipts.

We also publish stories through blogs, newsletters and other publications to raise awareness about the disorders we advocate for. Your information is only shared with your explicit permission including any videos and photographs you give us permission to share.

Information Automatically Collected

We use your Internet Protocol Address (IP) address to help diagnose problems with our server and to administer our Web site.

Like most websites, SRNA may place a cookie, or small file, in the browser files of a visitor’s computer. We do not use cookies to track your movement among different websites and do not exchange cookies with other entities.

We monitor traffic to the Website including to each page of the Website, and track time spent on each page.  We keep track of which online resources you use, where you are generally located, how you reached our Website, including the search terms that you may have used to reach the Website, and how you interact with our Services so we may better serve our community’s needs.


We respect and value your privacy and will never sell, trade, or rent your information.

We share information with those companies who process donations or purchases (e.g. Network for Good, Raisely, EveryAction, and Paypal). Any processing of such donations or purchases through those companies are governed by the terms of those companies’ websites.


We take commercially reasonable technical and organizational security measures to protect personally identifying informationand/or security measures required by applicable United States laws, regulations and rules. We are not liable for disclosure of personally identifying information due to errors in transmission or unauthorized acts of third parties.

In making your decision whether to provide personally identifying information, you should be aware of the general risks of transmitting information over the Internet. This Website is not encrypted, with the exception of processing of credit card information. In your use of the Internet, including copying or downloading of materials from this Website (to the extent permitted), you are responsible for implementing sufficient procedures and checkpoints to satisfy your requirements for accuracy of data input and output, backing up of data, and protection from “viruses,” “worms,” “trojan horses” or other malicious or damaging computer programs, code or software. While we make every effort to prevent unauthorized persons from accessing our files or tampering with our site, we cannot guarantee that these efforts always will be successful.

We keep information in our database permanently, unless you request that it is removed.  We store information relating to donations permanently.


SRNA does not sell, exchange or otherwise disclose user information outside the organization.


This site contains links to other sites. The Siegel Rare Neuroimmune Association is not responsible for the privacy practices or the content of such Websites. We encourage you to review the privacy policy of each site you visit.


This site supplements information that we provide with information that is received from third parties. The Siegel Rare Neuroimmune Association does not endorse any of the medications, treatments or products reported. This information is intended only to keep you informed. We strongly advise that you check any drugs or treatments mentioned with your personal physician before you try them.


Our site provides users the opportunity to opt-out of membership, receiving newsletters and other mailing from us by sending an email to [email protected] or unsubscribing from the electronic mailing list.


If you would like to remove, change and modify information previously provided, please email [email protected]


We will post any changes to our privacy policy on this website.


If you have any questions about this privacy statement, the practices of this site, or your dealings with this Website, you can contact us [email protected].