Our Boston announcement of the nonprofit
We collect certain personal information from visitors to our website if you choose to provide it to us. For example, we collect name, e-mail address, telephone number, and mailing address through the Newsletter sign up feature or make a donation through our website donation portal. We also collect this same data if a donation or grant is given through our physical address.
Sale of Collected Information
The Lambert-Eaton LEMS Family Association does not sell personal information to third parties.
Safeguarding Your Information
The Lambert-Eaton LEMS Family Association understands the importance of data security and we take reasonable measures that we believe are appropriate to protect your information from loss, misuse, alteration, or destruction.
The data we collect by using cookies is used to customize our website to your needs. After we use the data for statistical analysis, the data is completely removed from our systems.
Please note that cookies don’t allow us to gain control of your computer in any way. They are strictly used to monitor which pages you find useful and which you do not so that we can provide a better experience for you.
If you want to disable cookies, you can do it by accessing the settings of your internet browser. You can visit www.internetcookies.com, which contains comprehensive information on how to do this on a wide variety of browsers and devices.
Links to Other Websites
The LEMS Patient Registry with Sanford Research
Internet polls, questionnaires, and surveys are often used to collect information quickly and easily from respondents. However, to publish their results, researchers must only use information obtained in a specific way. The patient data they use must have written approval from patients to use their data this way and must adhere to strict privacy regulations.
The registry is compliant with the European Union General Data Protection Regulation (GDPR). CoRDS has worked hard to ensure that researchers can use the information you provide. CoRDS submits every questionnaire to their Institutional Review Board approval. The IRB is group that reviews the ethics of medical research studies. Informed consent also safeguards participant data. When registering to participate in CoRDS, participants (or their representatives) are given a chance to read the consent documentation before filling out the questionnaire. For any questions, participants can call CoRDS at + 1 877 658 9192 or send an email firstname.lastname@example.org.
If researchers receive approval to look at the registry or questionnaire responses, they will be given only the anonymous data without the identifiable information. The Lambert-Eaton LEMS Family Association can only access your identifiable information if you choose to share it with us when you complete your registry questionnaire. Your privacy is also protected even if you indicate that you are willing to be contacted for additional research. For example, a researcher might contact CoRDS to ask for additional information from all participants who have a specific symptom, such as loss of hearing. CoRDs would then contact every participant in the registry who said that they had loss of hearing and that they would like to participate in additional studies. CoRDS would then provide these people with the researcher’s contact information, and it would be up to the individual participants to contact the researcher to participate in additional research. CoRDS will never provide your contact information to anyone.
Changes to This Policy
If we make material changes to this Policy, we will change the “last updated” date so that you can easily determine whether material changes have been made since the last time you reviewed the Policy.
Point of Contact
The Lambert-Eaton LEMS Family Association
2420 Innovation Dr. #612881
Dallas, Texas 75216