Connect with our global family.
We want to warmly welcome you to connect with our worldwide family community on WhatsApp and Facebook.
These groups have been created as spaces for individuals with BPTF gene changes, and in particular their families or caregivers, worldwide, to share, learn and support each other. The two groups are predominantly made up of the parents of children with NEDDFL Syndrome.
The value of this community cannot be overstated. Everyone in our family group has been at the very beginning, finding out about this diagnosis. It is a safe space to ask questions, seek advice, and most of all to feel seen and understood.
To get connected, reach out to us via email