The goal of this series is to document and capture information that relates to the family experience in all its forms (caring for a child, grief, living with the adult onset forms) and the symptom and care management involved. These videos allow families, supporters and healthcare professionals worldwide to have access to information that may not be readily available to them in their area. An imperative goal of this series is to relieve the isolation brought on by these rare diseases.

To translate these videos:

Settings > Select Subtitles: English > Go back to Subtitles: Auto-translate > Select language

The translation will appear as subtitles albeit roughly translated.

Share your thoughts

We'd love to hear your feedback, suggestions and other ideas about this series. Fill out this form here and we'll take it all into consideration! There is always room to improve and we want to be sure we're offering all we can.