Recently the CIRM Board voted to support the creation of a Rare Disease Advisory Council (RDAC) in California. An RDAC is an advisory body providing a platform for the rare community to have a stronger voice in state government. They address the needs of rare patients and families by giving stakeholders an opportunity to make … Continue reading A rare chance to help those in need
Patient Advocacy
Hollywood and Patient Advocacy – two people who are on our Board but never boring
At first glance, Lauren Miller Rogen and David Higgins, PhD, seem an unlikely pair. She’s an actor, writer, and director and has worked with some of the biggest names in Hollywood. He has a doctorate in molecular biology and genetics and has worked at some of the most well-known companies in biotech. But together they … Continue reading Hollywood and Patient Advocacy – two people who are on our Board but never boring
Physicians and patient advocates on the front lines of the fight for a more equitable health system
Over the last year there has been increasing awareness of the inequalities in the American healthcare system. At every level there is evidence of bias, discrimination and unequal access to the best care. Sometimes unequal access to any care. That is, hopefully, changing but only if the new awareness is matched with action. At the … Continue reading Physicians and patient advocates on the front lines of the fight for a more equitable health system
An Open Letter to CIRM for World Sickle Cell Day
Nancy M. Rene Dear CIRM, World Sickle Cell Day is this Saturday June 19th. The goal of this day is to increase knowledge of the disease and understanding of the challenges faced. It is a day that I greet with very mixed feelings. I’m of course extremely grateful to CIRM for the time and money … Continue reading An Open Letter to CIRM for World Sickle Cell Day
Two voices, one message, watch out for predatory stem cell clinics
Last week two new papers came out echoing each other about the dangers of bogus “therapies” being offered by predatory stem cell clinics and the risks they pose to patients. The first was from the Pew Charitable Trusts entitled: ‘Harms Linked to Unapproved Stem Cell Interventions Highlight Need for Greater FDA Enforcement’ with a subtitle: … Continue reading Two voices, one message, watch out for predatory stem cell clinics
Hitting our Goals: Scoring a half century
Way, way back in 2015 – seems like a lifetime ago doesn’t it – the team at CIRM sat down and planned out our Big 6 goals for the next five years. The end result was a Strategic Plan that was bold, ambitious and set us on course to do great things or kill ourselves … Continue reading Hitting our Goals: Scoring a half century
Hitting our goals: regulatory reform
Way, way back in 2015 – seems like a lifetime ago doesn’t it – the team at CIRM sat down and planned out our Big 6 goals for the next five years. The end result was a Strategic Plan that was bold, ambitious and set us on course to do great things or kill ourselves … Continue reading Hitting our goals: regulatory reform
A word from our Chair, several in fact
In 2005, the New Oxford American Dictionary named “podcast" its word of the year. At the time a podcast was something many had heard of but not that many actually tuned in to. My how times have changed. Now there are some two million podcasts to chose from, at least according to the New York … Continue reading A word from our Chair, several in fact
Everything you wanted to know about COVID vaccines but never got a chance to ask
All this month we are using our blog and social media to highlight a new chapter in CIRM’s life, thanks to the voters approving Proposition 14. We are looking back at what we have done since we were created in 2004, and also looking forward to the future. Today we feature a rare treat, an … Continue reading Everything you wanted to know about COVID vaccines but never got a chance to ask
Progress in the fight against Sickle Cell Disease
Marissa Cors, sickle cell disease patient advocate Last November Marissa Cors, a patient advocate in the fight against Sickle Cell Disease (SCD), told the Stem Cellar “A stem cell cure will end generations of guilt, suffering, pain and early death. It will give SCD families relief from the financial, emotional and spiritual burden of caring … Continue reading Progress in the fight against Sickle Cell Disease