Phenotype Study Webinar

You can access the recording of this webinar on our Family Resource Page. Access is for members only (free option available).

Family Resources

Information about NALCN Channel-related disorders can be found in this Fact Sheet from the New South Wales Center for Genetics Education. Please log in to access our family resources. Includes conference and meeting recordings, support group links, and more.

Channeling Hope FoundationCHF

CHF Friends and Family Webinar: Phenotype Study Updates

Date: May 30, 2024

Time: 9:00 AM  CDT (US and Canada) / 4:00 PM CEST (Spain)

Description: Drs. Paloma Parra and Antonio Gil-Nagel Rein will present updates to families on their NALCN/UNC80 phenotype study.

CLICK HERE TO REGISTER

Welcome! You are invited to join a meeting: CHF Friends and Family Webinar: Phenotype Study Updates. After registering, you will receive a confirmation email about joining the meeting.

Drs. Paloma Parra and Antonio Gil-Nagel Rein will present updates to families on their Phenotype study.

Zoom

The NALCN/UNC80 phenotype study was presented at the NALCN Conference in September 2023. We're excited that Drs. Paloma Parra and Antonio Gil-Nagel Rein will join our next family and friends webinar to present updates on their study. The presentation will be in English, but Q&A and clarifications can be made in Spanish, as requested.

A phenotype study is an investigation focused on observable characteristics, such as physical traits and behavior. Since rare diseases often have limited data and understanding, phenotype studies play a significant role in characterizing these diseases and aiding in diagnosis, treatment, and research. We're grateful to Drs. Parra and Gil-Nagel for their contribution to the field and to all the families that have participated in the study!