Frequently Asked Questions

If I am unable to attend the conference, will sessions be streamed and/or recorded and available for viewing?

Yes, most sessions will be live streamed. Once available, we will post the link for streaming. Most all sessions will be recorded and posted to our YouTube page for viewing at your convenience. 

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Do people bring their children?

Yes, people do bring their children; however, childcare is not provided at the event. Some families elect to bring adult family members or caregivers to watch their children during the presentations so that parents can focus on the speakers. Children are expected to be supervised at all times. 

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Are there scholarships available for families?

The Wiedemann-Steiner Syndrome Foundation is pleased to announce that it will be providing a limited number of scholarships of $500 USD each to attend the 2024 International WSS Foundation Family Conference in-person. These scholarships are available via the Nicholas Lagravinese Memorial Fund- funds donated in memory of Nicholas Lagravinese. 

 

Eligibility Criteria:

• You have been diagnosed with Wiedemann-Steiner Syndrome (WSS) or are the parent/caregiver of someone diagnosed with the Wiedemann-Steiner Syndrome.

• You have not previously attended an International WSS Foundation Family Conference in person.

• You are attending the 2024 WSS Foundation Family Conference in-person (virtual attendees are not eligible for this scholarship).

• You have enrolled in RARE-X and are up-to-date on filling out and submitting surveys you/your family is eligible to fill out.

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Families have been able to find funding for attendance in various ways. Some will do a fundraiser in advance of the conference like a garage sale, bake sale, or something of the like. Others have been able to acquire funding through local or state services.