Today Alzheimer’s disease, or AD, is a fatal diagnosis with death preceded by a slow, painful decline and loss of quality of life. The ACT-AD Coalition believes we have the ability to vastly improve the outlook for people with Alzheimer’s disease and their caregivers in the next decade and we are committed to working with a diverse group of stakeholders to Accelerate a Cure and Treatments for Alzheimer’s Disease. We need your help!
Join ACT-AD and Tell Others About Our Mission
The more people who know the facts about Alzheimer’s disease and the work ACT-AD is doing, the better we will be able to effect change. Use the following materials to join ACT-AD and to gain insight into the mission of ACT-AD.
Show Your Support
If you or your organization are interested in supporting ACT-AD’s mission, we encourage you to link to this site. Create your own link and point it toward http://www.act-ad.org/.
Talk about ACT-AD in Your Newsletter or Publication
In addition to our own media activities, we rely on people with a passion for our cause to spread the word. Use the information posted in the About Us section or our Activities page as a jumping off point for your own blog post or news article.
Stay up-to-date on ACT-AD’s activities by signing up to receive our newsletter.
Help FDA and Make Your Voice Heard
If Alzheimer’s disease has touched your life, you could become part of the search for a cure.
Since 1991, the FDA has had a patient representative program for some select diseases. In 2001, FDA initiated a related patient consultant program. The patients involved in those programs have helped to revolutionize treatment and research practices. Now, the FDA is expanding these programs for those afflicted with Alzheimer’s and their caregivers.
What is a patient representative/consultant?
Patient representative/consultants are people who have dealt directly with a disease-be it cancer, HIV/AIDS or Alzheimer’s disease-and that work specifically with the FDA and drug companies to be a voice of the patient community.
The patient representative/consultant working with FDA attends a training session and follow-up conferences to prepare him or her for participation in phone meetings between the FDA and drug companies-all expenses are paid for by the FDA. These phone meetings deal with new drugs that are being evaluated for use in treating Alzheimer’s disease. In other cases, a patient representative/consultant may serve on an FDA advisory committee that might be considering a drug marketing application.
Patient representatives/consultants have helped the FDA since 1991. In that time, the input of a number of cancer and HIV/AIDS patients has led to a better understanding of how different drugs and treatments affect patient lives. With their first-person experience of living with side-effects of certain treatments, and their understanding of the importance of quality-not just quantity- of life is, patient consultants are able to identify and articulate issues presented by the clinical data that others may miss.
These contributions lead to a more robust and thorough review process.
How do I get involved?
A patient representative/consultant must have:
- Personal experience with Alzheimer’s disease, either as an Alzheimer’s patient or as a family member or friend of an Alzheimer’s patient;
- Experience in Alzheimer’s patient advocacy;
- Ability to represent the interests of Alzheimer’s patients and communicate their perspective; and
- General knowledge about Alzheimer’s research and the Alzheimer’s clinical trial process.
The requirements for being an FDA patient representative/consultant are straightforward and directly related to the duties you will be performing. All aspects of the meeting, including the meeting itself, the background material the patient consultant receives about the drug undergoing trial, and the application for clinical trial with the FDA may be confidential. While he or she may not be able to discuss the specifics of any given trial, the patient consultant is encouraged to share information about the general process with the patient community.
Anyone interested in becoming a patient consultant should send a letter of interest to:
Food and Drug Administration
Office of Special Health Issues
10903 New Hampshire Avenue
Bldg. 32, Room 5367
Silver Spring, MD 20993
e-mail: [email protected]
The understanding of patients’ real world concerns that have been gained from patient consultants has helped revolutionize the research and product review processes in the FDA. Those changes have saved or prolonged many lives.
Right now, more than five million people are suffering from Alzheimer’s disease. Many more have loved ones with Alzheimer’s. With strong participation from those millions of caregivers and family members-people just like you-great progress can be made.
For more information
More information on all the patient participation opportunities offered by the FDA can be found on their website.