Rezultati pretraživanja
  1. 8. sij
  2. I cried. But it was a privilege to be able to tell the story for my daughter, daughter, and so many others like them.

  3. took my child’s voice. On Nov 1, we will speak on her behalf at the first patient-focused drug development () meeting for DEE/LGS. Join us. End

  4. 8. sij

    This is incredible! Thank you to all who are contributing to this! No-charge genetic testing for any child under the age of eight who has an unprovoked seizure.

  5. 12. stu 2019.

    Reflecting on my great colleagues and the inspiring/unstoppable families I have the privilege to work with...

  6. 30. sij

    Great to meet-up with Beverley Searle from today ...potential opportunities to have their Ring20 booklet translated into other languages...

  7. Another critical yet unmet need in the treatment of syndrome.

  8. 21. ožu 2018.

    We need more focused research on like hypothalamic hamartomas

  9. 23. lis 2019.

    JOIN US: Your voice as a loved one can help shape the future of treatment! The first patient-focused drug development () meeting for DEE/LGS will be webcast live on Nov 1. Join this landmark event

  10. 6. kol 2019.

    CMO, sat with Karen Utley, President and Co-Founder of the to discuss what it’s like to be a leader in the community and what matters most to families affected by deficiency disorder. Click here to listen.

  11. 25. pro 2018.
  12. 6. ožu 2018.

    PCDH19 Epilepsy is a syndrome with early onset , cognitive and sensory delays, and behavioral problems. It's caused by a change or mutation of the PCDH19 gene found on the X chromosome. About PCDH19 Epilepsy: 1/2

  13. 23. lis 2018.
  14. 16. lis 2019.
  15. 9. srp 2018.

    Join the Rare Epilepsy Network (REN) registry TODAY and: Impact: Research, Diagnosis, Treatments, Find the Cause, and Lead the Cure for hypothalamic hamartomas (HH) and other rare syndromes

  16. 24. sij 2019.

    is an ultra rare genetic disease of which is usually the first sign in a child aged 6 or 7 years old. In our latest blog post, mum and co-founder of shares her story.

  17. 9. kol 2019.

    how can I assure those w/ my kid at schl are trained before day 1? General seizure training is great but bc of her and they need “Alexis training”, which I am happy to provide.

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  18. 25. tra 2018.

    A story of for those with a hypothalamic hamartoma.

  19. Thanks for sharing this link and all your support for and families, !

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