From September 19-21, 2023, the Global Genes RARE Advocacy Summit was held in San Diego, CA. This event is a yearly convergence for rare disease stakeholders with a special emphasis…
Joe and Cynthia are the founders of Jordan's Guardian Angels, a Patient Worthy partner organization that is committed to supporting research into Jordan's syndrome, an incredibly rare disorder named after…
For the last seven years, the Global Genes Rare Compassion Program has been providing medical students with an opportunity to bond with patients and families who have been diagnosed with…
A new partnership has been formed between Global Genes and the Rare Disease Diversity Coalition (RDDC) - created by the Black Women's Health Imperative - in an effort to increase…
The Global Genes RARE Patient Advocacy Summit September 21-23, 2020 This conference will be a convergence of a variety of rare disease stakeholders, such as rare disease patients, world renowned…
RARE on the Road: a Rare Disease Leadership Tour June 27th, 2020 New Orleans, LA The Rare Disease Leadership Tour is designed to give insights and education to rare disease…
As you know, COVID-19 has fundamentally changed our daily life. What began as a novel coronavirus in Wuhan, China has developed into a global pandemic: 9 million diagnosed cases…
RARE on the Road: a Virtual Rare Disease Leadership Tour June 23rd-24th, 2020 The Virtual Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates,…
The RARE Drug Development Symposium June 11-12, 2020 NOTE: Due to the ongoing coronavirus/COVID-19 pandemic, this event is now virtual. The RARE Drug Development Symposium is intended as an event…
RARE on the Road: a Rare Disease Leadership Tour March 28th, 2020 Minneapolis, MN The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates,…
RARE on the Road: a Rare Disease Leadership Tour April 17th, 2020 Burlingame, CA The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates,…
RARE on the Road: a Rare Disease Leadership Tour May 30th, 2020 Raleigh, NC The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates,…
Check out Part One here! Sean Baumstark and Kyle Bryant, hosts of the 2 Disabled Dudes Podcast, led a panel discussion with Neena Nizar, Onno Faber, and Katie Stevens. Kyle…
The 2019 Global Genes Rare Patient Advocacy Summit was filled with incredible presentations that highlighted steps for progress in research and advocacy organization, provided solidarity for the rare community, and…
The Global Genes RARE Patient Advocacy Summit This conference will be a convergence of a variety of rare disease stakeholders, such as rare disease patients, world renowned experts, and caregivers.…
RARE on the Road RARE on the Road is a Rare Disease Leadership Tour that will be making several stops throughout the US. The goal of this event is to…
The annual Global Genes Rare Patient Advocacy Summit is wonderful place for families affected by rare disease to come together and interact face to face with advocacy leaders in addition…
Connect, Enpower, and Inspire This free workshop will available for both caregivers and LEMS patients. Participants will learn new strategies for promoting advocacy and the development of community. The event…
February 16, 2018 Governor Herbert Declarations: Rare Disease Day on February 28th Undiagnosed Rare Disease Day on April 29th Park City, Utah. (February 16, 2018) – Rare and Undiagnosed Network…
The world of rare disease is seeing a ray of sunshine with a viable partnership. Two powerhouses of patient advocacy are uniting together to bring about change, awareness and cure-searching.…
Global Genes is one of the world's most prominent rare disease advocacy groups and early next year, they will host the second annual RARE in the SQUARE event. At this…
According to Global Genes' Rare Daily, Alexi’s mother always knew her child was different. It would take almost nine years to find the proper ADNP diagnosis, but Alexi’s mother never gave…
According to a first-person story on the Global Genes' Rare Daily website, Tara Voogel and her family were plagued by a medical mystery for 40 years before Tara finally found…
At the 2017 Global Genes Advocacy Summit, one of the break-out sessions discusses the drug development process. But it goes beyond this to educate us, the patients, on how imperative…
Patient Worthy is fortunate enough to be at the 2017 Global Genes Rare Patient Advocacy Summit this week. While the personal stories that have been shared are highlights of the…
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