ESCO Family Voices
The Family Voices Group brings together parents and caregivers within the European STXBP1 community to connect, share, and collaborate in a supportive, understanding environment. These monthly (online) meetings provide a dedicated space tailored to the real-life experiences of our families.
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Knowledge Exchange: Sharing practical advice, navigating care systems, and learning from each other’s day-to-day experiences.
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Open Discussion: A safe, judgment-free space to talk openly about current challenges, celebrate small and large successes, or simply vent.
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Mutual Understanding: Connecting with a community that truly understands the unique realities of living with an STXBP1 diagnosis.
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Informing Research & Care: Helping guide consortium initiatives by ensuring the lived experiences and priorities of families remain at the heart of our work.
Whether you are seeking advice, looking to offer support, or simply want to connect with others on a similar journey, the Family Voices Group is here for you.
Do you wish to join the ESCO Family Voices group? Contact us via email with your name and your experience caring for a child with STXBP1.
To note: Meetings are held in English. Language Interpretation is not currently available.