we are glad you found us.

Join the Family Network

We are glad you found us! If you have have a loved one diagnosed with a KCNT1 related neurodevelopmental disorder and epilepsy you are not alone! It is easy to join the community and be kept informed about educational events, studies and clinical trials. If you are a parent or caregiver you can follow the steps below to sign up for our Contact List. Other friends and family members can signup for a newsletter and updates with just a name and email address here.

Join our Foundation Facebook group, and meet our friends at private Facebook Support Groups including: KCNT1 Gene Mutation Support Group, ADNFLE, and MMPSI.

Step 1 - Register

KCNT1 Family Contact List

Parent or Caregiver: If you are the parent or primary caregiver for a person with a KCNT1 gene variant, we encourage you to sign up for our Family Contact List. If you, yourself have a KCNT1 variant, we also invite you to fill this form out. This information will be used to keep you informed of research and clinical trial opportunities, to share educational resources, as well as to help families connect with each other. Your information will never be shared with third parties of any kind and will be only be used for communication purposes.

  • Pai ou responsável: Se você for o pai ou responsável principal de uma pessoa com mutação KCNT1, recomendamos que você se inscreva em nossa Lista de Contatos Familiares. Essas informações serão usadas para mantê-lo informado sobre as oportunidades de pesquisa e ensaio clínico, para compartilhar recursos educacionais, bem como para ajudar as famílias a se conectar umas com as outras. Suas informações nunca serão compartilhadas com terceiros de qualquer espécie e serão utilizadas apenas para fins de comunicação.

    Antes de preencher este formulário, encorajamos você a criar um número de identificação pessoal, um número de identificação de pesquisa clínica (número CRID) em www.TheCRID.org e incluí-lo neste formulário. Não tem custo. Isso nos permitirá manter a sua identidade confidencial quando vinculada a um biobanco, registro ou outros estudos futuros.Description text goes here

  • Parent ou soignant : si vous êtes le parent ou le soignant principal d'une personne porteuse d'une mutation KCNT1, nous vous encourageons à vous inscrire à notre liste de contacts familiaux. Ces informations seront utilisées pour vous tenir informé des opportunités de recherche et d'essais cliniques, pour partager des ressources éducatives, ainsi que pour aider les familles à se connecter les unes aux autres. Vos informations ne seront jamais partagées avec des tiers de quelque nature que ce soit et ne seront utilisées qu'à des fins de communication.

    Avant de remplir ce formulaire, nous vous encourageons à créer un numéro d'identification personnel, un numéro d'identification de recherche clinique (numéro CRID) sur www.TheCRID.org et à l'inclure dans ce formulaire. Il n'y a aucun coût. Cela nous permettra de garder votre identité confidentielle lorsqu'elle est liée à une biobanque, un registre ou d'autres études futures.

  • Elternteil oder Betreuungsperson: Wenn Sie Elternteil oder primäre Betreuungsperson einer Person mit einer KCNT1-Mutation sind, empfehlen wir Ihnen, sich in unsere Familienkontaktliste einzutragen. Diese Informationen werden verwendet, um Sie über Forschungs- und klinische Studienmöglichkeiten auf dem Laufenden zu halten, Bildungsressourcen auszutauschen und Familien zu helfen, miteinander in Kontakt zu treten. Ihre Daten werden niemals an Dritte weitergegeben und ausschließlich zu Kommunikationszwecken verwendet.

    Bevor Sie dieses Formular ausfüllen, empfehlen wir Ihnen, eine persönliche ID-Nummer, eine klinische Forschungs-ID-Nummer (CRID-Nummer) auf www.TheCRID.org zu erstellen und in dieses Formular aufzunehmen. Es entstehen keine Kosten. Dadurch können wir Ihre Identität vertraulich behandeln, wenn sie mit einer Biobank, einem Register oder anderen zukünftigen Studien verknüpft werden.

  • Padre o cuidador: si usted es el padre o el cuidador principal de una persona con una mutación KCNT1, le recomendamos que se inscriba en nuestra Lista de contactos familiares. Esta información se utilizará para mantenerlo informado sobre las oportunidades de investigación y ensayos clínicos, para compartir recursos educativos y para ayudar a las familias a conectarse entre sí. Su información nunca se compartirá con terceros de ningún tipo y solo se utilizará con fines de comunicación.

    Antes de completar este formulario, le recomendamos que cree un número de identificación personal, un número de identificación de investigación clínica (número CRID) en www.TheCRID.org y que lo incluya en este formulario. No tiene costo. Nos permitirá mantener la confidencialidad de su identidad cuando se vincule a un biobanco, registro u otros estudios futuros.


Other Friends and Supporters

Other community members who are interested in learning more about KCNT1 disorders, supporting our community of families, and staying up to date on events and research can sign up for this separate mailing list (click here).

 
 

Step 2- If you live in the U.S., Enroll in our digital natural history study with Citizen Health

 

U.S. families can sign up for Invitae KCNT1 study here. You will need to take a photo of your ID, child’s birth certificate (you can order a replacement from here), genetic report or the name of the hospital or doctor who ordered it, a list of the main doctors and hospitals you use.

This is a very important study for the KCNT1 community. It will give researchers and drug developers information they need to better understand the disease, develop treatments and design clinical trials.