CLOVES Syndrome Science News is a periodic email newsletter that is used to inform individuals with CLOVES Syndrome and their primary caregivers about:
- discoveries about CLOVES Syndrome and PROS that may impact care decisions
- opportunities to participate in research
- opportunities to contribute data
Details:
- CLOVES Syndrome Science News is an email newsletter
- It’s easy to join!
- There is no cost to you: the costs are supported by CLOVES Syndrome Community
- Subscribers will be provided with contact information about relevant research and survey efforts as we are made aware of them.
- You can choose to withdraw from email list at any time.
How is information stored?
Once you have entered and submitted this information online, the data will be stored in a secure database.
The information stored will not be shared with anyone outside of CLOVES Syndrome Community.
Who can subscribe to the CLOVES Syndrome Science News newsletter?
Anyone with a diagnosis of CLOVES Syndrome or a PROS condition, as well as caregivers and interested loved ones can subscribe.
Other details:
CLOVES Syndrome Science News is not the same as our CLOVES Community newsletter mailing list.
We will not use this list for marketing or fundraising.
You may opt-out of the CLOVES Syndrome Science News newsletter list at any time by emailing us at [email protected] or by clicking “unsubscribe” from the bottom of our emails.
If you are an adult with CLOVES or a primary caregiver to a child with CLOVES, and are interested in contributing to a deeper scientific understanding of CLOVES Syndrome, consider joining our CLOVES Syndrome Registry. Learn more here.