Submit a comment below on the topics we will be discussing in advance of the EL-PFDD meeting. Comments should be submitted individually.

The comments collected may be shared during the Alexander Disease EL-PFDD and may also be used in the final Voice of the Patient report (with identifying information removed).

Topic 1 - Alexander Disease Symptoms & Daily Impact

• Of all the health effects of Alexander Disease, which 1-3 symptoms have the most significant impact on you or your loved one’s life?

• How does Alexander Disease affect you or your loved one on best and on worst days?

• How have your or your loved one’s symptoms changed over time? How has the ability to cope with the symptoms changed over time?

• Are there specific activities that are important to you or your loved one that you/they cannot do at all or as fully because of Alexander Disease?

• What do you fear the most as you or your loved one gets older? What worries you most about you or your loved one’s condition?

Topic 2 - Current & Future & Alexander Disease Treatments

• What are you currently doing to manage your or your loved one’s Alexander Disease?
  How well do these treatments treat the most significant symptoms and health effects of Alexander Disease?

• What are the most significant downsides to your or your loved one’s current treatments and how do they affect daily life?

• Short of a complete cure, what specific things would you or your loved one look for in an ideal treatment for Alexander Disease?

• What factors would be important in deciding whether to participate in a new research trial?