Advocating for Rare Diseases Law in Chile
Fundacion GIST Chile was invited by the Federation of Rare Diseases in Chile (FECHER) to participate in a meeting where the main topic was the need of a Rare Diseases Law in Chile. The [...]
Countdown to Rare Disease Day 2017
Rare Disease Day is celebrated on the last day of February each year. The day is celebrated in order to bring attention to the general public and decision makers about rare diseases and how [...]
Seminar for Chilean Patient Organizations Aligns Common Goals
On November 26, 2016, patient advocacy organizations in Chile came together at the School of Medicine at the University of San Sebastian in Santiago, Chile for a seminar entitled "Clinical Studies, Clinical Guidelines and [...]
Annual Report 2015 – Advocacy
Advocacy continued to be an important focus in 2015. Our initiatives expanded globally, with the overall goal of assuring that all GIST patients have access to quality medical treatment. The LRG continued to forge [...]
Navigating the Medicare Maze
On September 28, 2016, the Life Raft Group was pleased to have Melissa Simpson, Senior Program Manager in the Center for Benefits Access at the National Council on Aging share her knowledge and insight [...]
Fundación GIST Chile GIST Awareness Day Video
On the GIST Awareness Day, Fundación GIST Chile wants to be the voice of all people who require that Health Systems cover the treatments that we need.
Thoughts on the Cancer Moonshot Summit
On July 29, 2016 I traveled to Howard University in Washington, DC to be a participant in Vice President Joe Biden’s Cancer Moonshot Summit. This invitation-only event was designed to bring together individuals and [...]
LRG Advocates Making a Difference: OVAC Lobby Day
WOW!!! What a great experience, to make your presence known in Washington DC! Each year, One Voice Against Cancer (OVAC) organizes a lobby day to urge Congress to support funding for cancer research, prevention [...]
LRG to Participate in Moonshot Project
On June 29th, LRG Executive Director, Norman Scherzer, will be attending Vice President Joe Biden’s “National Moonshot Summit,” at Howard University. A “by invitation only” event, the summit is designed to bring together scientists, [...]
Advocacy: Patients Shall Be Held Harmless
There has been discussion in the news recently concerning charitable giving patient assistance programs that aid Medicare and Medicaid patients with premium assistance. New federal regulatory guidance seeks to prohibit charitable organizations from helping [...]