Press

More than 2,300 persons affected by frontotemporal degeneration, including more than 400 diagnosed persons, have enrolled in the FTD Disorders Registry (FTDDR) since the data collection tool launched two years ago. The FTDDR is an international Contact Registry and a North American Research Registry. On that first day, March 28, 2017, the Registry broke all…

Guess who’s turning two? Yes, 2 years ago on March 28, 2017, the FTD Disorders Registry (FTDDR) was launched when our website went live and we began enrolling persons affected by the spectrum of FTD disorders (bvFTD, PPA, PSP, CBD and FTD-ALS). Celebrate with Us! Watch for more news and information next week as we look…

Find Help. Share Hope. You are invited to the 2019 AFTD Education Conference on May 3, 2019, in Los Angeles.

The 16th Annual CurePSP Awareness & Memorial Walk, sponsored by the SW Florida PSP Support Group, will be Saturday, March 9, 2019, at Frank E. Mackle Community Park, Marco Island, Florida. This event supports all affected by PSP, CBD, and MSA. The purpose of the CurePSP Awareness & Memorial Walk is to honor those who have…

Thursday, February 28, 2019, is Rare Disease Day® in the United States. The main objective of this day, which is observed the last day of February each year, is to raise awareness about rare diseases and their impact on patients’ lives. In the United States any disease affecting fewer than 200,000 people is considered rare. This definition comes…

You are invited March 2, 2019, in St. Paul, MN, for a day of education, information, and support.

“It’s Coming…the 2018 World FTD Awareness Week.

This conference, June 29th – 30th, 2018 focuses on PSP, CBD, and MND.

We need an official title for the newly launched Registry newsletter.

Many countries, one world, one hope to #EndFTD