

dom, 09 feb
|Virtual event
Global SDS Family & Adults Coffee Chats
Monthly virtual get-together to build community and support.
Horario y ubicación
09 feb 2025, 15:00 – 17:00
Virtual event
Acerca del evento
NEW on 2/9/2025: Combo Family and Adult meeting!
Our adult group requested more frequent meetings, not just quarterly. And, our families are eager to meet adults with SDS. So, we are trying out something new this month. Let us know what you think!
We will start off with the regular SDS Family Coffee chat at its usual time (Second Sunday of the month, 3-5pm ET (New York Time). During the second hour, we will open up the room to our adults. The last hour is reserved to the adults only. So the Adults with SDS Coffee Chat will be held from 4-6pm ET (New York time). This will allow both groups to have both focused time to be with their groups and also interact with each other.
Register at www.sdsalliance.org/coffee
We will send out a short survey to members next week to hear your feedback.
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Global SDS Family Coffee Chat
Register at www.sdsalliance.org/coffee to receive the meeting link and details.
The goal and vision for this program is to connect SDS families worldwide. Living with ultra-rare diseases like SDS can feel very isolating, and family connections are an essential source of comfort, information, knowledge, and support.
This virtual meeting is for patient families by patient families. The organizers - also part of the community - are creating infrastructure and support for the community to thrive.
For this meeting, the SDS family community is defined as people with a genetically confirmed diagnosis of SDS or an SDS-like syndrome (based on the genes SBDS, EIF1, SRP54, and DNAJC21) and their direct caregivers (parents, legal guardians, or partners).
Please only join if you meet these criteria. If you are seeking genetic testing and need guidance, please contact genetics@SDSAlliance.org.
Register at www.sdsalliance.org/coffee to receive the meeting link and details. Login and call-in information will be emailed to participants who sign-up before the meeting. If we don't already know you, we may reach out to you to welcome you to the community.
We look forward to connecting soon!