Search Media Items

Researchers are interested in developing a registry protocol to obtain biologic and environmental samples anonymously from adult volunteers for use in laboratory tests and studies. The samples will be used to determine if new tests are sufficiently valid and precise to be used in research studies and for quality control purposes.

Reports about clinical research study results are often in the news, but it can be difficult to find out about studies that are in progress. If you or a loved one has a rare condition, you may be interested in participating in a research study. This guide can help you find current research studies.

Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives. Others are searching for medical information, treatment options, the latest research, or financial aid resources. This guide will help you learn more about the different types of information and services offered by nonprofit support and advocacy groups.

Mona Marin, MD1, English D. Willis, MD2, Ann Marko2, Sonja A. Rasmussen, MD3, Stephanie R.

It’s been over one year since the incredible Amyotrophic Lateral Sclerosis (ALS) Ice Bucket Challenge. Not since Lou Gehrig made his famous “Luckiest Man on Earth” speech in 1939 has so much public attention been focused on ALS. The Ice Bucket Challenge returned this past August and will every year thereafter until a cure is found.