Privacy Policy
Last updated: April 2026
Your privacy matters to us. This policy explains what information we collect, how we use it, and the choices you have. als.COMMUNITY is hosted on Mighty Networks. By using our platform, you agree to both this policy and Mighty Networks' Privacy Policy.
What we collect
When you create an account, we collect basic information — your name, email address, and any profile details you choose to share. If you attend events or engage with our forums, that activity is associated with your account. We don't collect payment information; als.COMMUNITY is free.
We may also collect standard web traffic data (browser type, pages visited, time on site) to understand how the platform is being used and how we can improve it.
How we use your information
We use your information to:
- Operate and improve the platform
- Send you community notifications and updates you've opted into
- Respond to questions or requests you send us
- Share relevant news, events, and resources from als.COMMUNITY
We do not sell your data. We do not share your information with third parties for marketing purposes.
Who can see your information
als.COMMUNITY is a private community. Non-members cannot see content, conversations, or member profiles. You control what you share in your profile and in community discussions.
Platform infrastructure is managed by Mighty Networks, which maintains its own data security standards. You can review their practices at mightynetworks.com.
Your choices
You can update or delete your profile at any time. To request removal of your data entirely, contact us at info@als.community. You can also adjust your notification settings directly within the platform.
A note for people living with ALS and caregivers
We understand that health information is sensitive.
We will never share individually identifiable health information without your explicit permission. Any aggregate data used for community reporting or research purposes will be fully anonymized.
Contact us
Questions about this policy? Reach out at info@als.community.