Newly Diagnosed
You are NOT alone!
For Families
Learning that you or your child has a POU4F1-related disorder can be overwhelming, confusing, and isolating. With fewer than 30 known cases worldwide, it’s common to feel lost when facing such a rare and little-understood condition. But you are not alone!
Connecting with others who understand your experience can bring comfort, guidance, and strength. This community exists to support you! Offering connection with other families, sharing lived experiences, and providing the most up-to-date scientific information available on the POU4F1 gene.
A POU4F1 diagnosis does not define your child or your family. Your child or loved one is still the same beautiful and unique individual. While this journey may look different than what you imagined, there will be moments of joy, love, and connection that shines even brighter because of the challenges.
It is okay to grieve the loss of expectations you had for your child or loved one. It’s also okay to celebrate every milestone, big or small, in your child’s own time and way. Your love, advocacy, and presence matter more than anything else.
You may feel like you have to be strong all the time, but leaning on others is a strength too. Whether it’s family, friends, other parents walking a similar path, or professionals who can guide you, you don’t have to carry this weight alone.
Above all, remember that hope is not lost. While POU4F1 is rare, research is growing, awareness is increasing, and the community around this condition is here to support you. Every step forward, no matter how small, matters! You and your loved one are part of a bigger story of resilience and love.
If you are struggling to cope with this diagnosis, please understand that there is no shame in asking for help. Please speak with a Professional Therapist.