 After hearing from our Registry Members, we have heard you loud and clear that you wanted an introduction of a Private Message Board that will give the ability in a closed forum to discuss and share with other families all things Chromosome 18 related. After beta testing for months we are pleased to announce that we are rolling out our new messaging platform called
RYVER
(pronounced River). This platform will allow our registered members who are parentsor guardians to engage in communications with other members and Chromosome 18 coordinators. Through RYVER, these members can exchange messages, ask
questions, share pictures and more. This wonderful and FREE benefit is available to Chromosome 18 Registry members only.
The first forums to go live will be Syndrome Forums (Ring 18, Tetrasomy 18p, Trisomy 18, 18p- Pitt Hopkins and 18q-) today, December 28th. Any other forums will be announced in the first quarter of 2017.
To join a Syndrome Forum, you MUST be a parent or guardian of an affected child. You must register HERE with you First & Last Name as your "username" and type parent or guardian as your "role".
If you need
additional help, http://support.ryver.com
is great for insight and support.
RYVER is not designed to take the place of Facebook, Twitter, Instagram or any other social media but to enhance the private communications between our families.
We hope you are excited as we are about this new development.
RYVER is available for app download for your desktop on your
Windows
or
Mac
as well as your
Android
and
Apple
devices.
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