Need help from anyone who lives in the United States and has Alopecia.

I am the legislative liaison for the National Alopecia Areata Foundation in Massachusetts.  We have an action alert out that we need as many people as possible to provide input on their condition as possible so that we can be involved in a program that the FDA has called Patient Focused Drug Development Initiative (PFDDI).  PFDDI is a program that the FDA has begun to get the patient perspective about what is like to live with a condition and how it affects their life in order to help with assessing the development of drugs for a particular condition and the benefits and risks as it relates to the perspective provided.

Here is what the FDA is looking for:

• We need as many people with Alopecia in the group to write their story (while closing on December 5, we'd really like to be done by December 3).  Each set of comments can be no longer than 5000 characters.
• Answer the following questions:
  • How does Alopecia impact your life and quality of life?
  • What are the symptoms you experience that are impossible to scientifically quantify (depression, anxiety, etc)?
  • What is your level of satisfaction with current therapies and what is your level of frustration with the lack of available treatments
  • How willing would you be to personally assist the FDA with efforts to improve their understanding of the patient experience (meaning could you fly to DC to attend a meeting and provide input)?  When they hold their meetings, they would like to fill the room with a group.
• Get everyone to send the comments to me and I can get them into the FDA website, or  enter them at regulations.gov (let me know and I will provide you with directions) and send a copy to me (we want a hard copy to go to FDA as well).
• I need the name and email for anyone who submits input
• A parent can write along with a child; husband/wife/sibling, etc.  I asked those questions.  They welcome input from anyone who is affected by this.

Appreciate your reading this infromation and look forward to your comments.

Marianne Peterson