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The Power of Video

There are over 10,000 different rare disorders, which cumulatively impact over 30 million Americans and 400 million people worldwide. Clinicians lack experience and training in rare disorders and have little opportunity to see patients with rare diseases, often failing to recognize the range of symptoms.  Because of the lack of visibility, clinicians may fail to recognize them, leading to late diagnoses and improper or no treatment.  

Video documentation is uniquely suited to meet these needs. Video can show the symptoms of rare disorders in natural and real settings and can communicate the nuances of symptoms in ways that text descriptions cannot. Video can be paused, slowed down, sped up, and re-watched to emphasize and isolate subtle and complex characteristics of symptoms and behaviors. Video also brings viewers virtually face-to-face with people living with a disease, allowing them to see the disorders impact on their quality of life and daily functioning. This makes video a valuable tool for gaining significant insight into the disorder. However, there are currently few video resources available on rare diseases. 

The Clinical Picture Maker aims to change that. Through collaboration with FamilieSCN2A and your help we can make SCN2A visible.

Go to our homepage and scroll down to the page to see more examples of the power of video in documenting rare disorders.

Your Participation is the Key to Success

The aim of this project is to develop the Clinical Picture Maker, an online platform which will facilitate the creation, organization, and dissemination of video documentation of rare diseases. The CPM includes the DAYTool, a web application which guides individuals with rare disorders and their families to record and upload videos demonstrating all different aspects of life with their rare disorder. 

The DAYTool video will form the basis of the SeeSystem Rare Disease Video Lexicon, a searchable online video library providing rich, detailed visual documentation of many different disorders.

Participation from families is at the heart of this project. By collecting videos directly from parents and caregivers, we can both accelerate the production of video documentation of SCN2A-related disorders, and also highlight the voices and lived experiences of patients and their families. With parents and families leading the way and showing what life with SCN2A looks like, we can better educate clinicians, medical students, therapists, as well as other families about the symptoms and challenges associated with SCN2A.

We are currently in Phase I of the project, where we will asses the effectiveness of patient and parent-recorded videos in helping medical students, clinicians, researchers, and others better be able to identify and understand of SCN2A-related disorders. Our close collaboration with FamiliesSCN2A along with experts in the field provides us with the most up-to-date and important information and keeps us grounded to the priorities and perspectives of the community.

Who We Are

Since 1995, GeneticaLens has developed a wide spectrum of services to deliver high quality media content to the medical community and families it serves and to bring the experts and families together – to share their experiences, and research. Our team includes filmmakers, internet technologists, experts in pediatrics, neurology, and other disciplines.

To develop the Clinical Picture Maker, GeneticaLens is collaborating with the FamilieSCN2A Foundation, as well as New York University's Tisch School of the Arts and Grossman School of Medicine.