January Newsletter (2023)
This month we welcome the new year with new growth, new events, and more!
View some of our most recent media mentions. We’re proud to be featured on local
and national levels, speaking about sickle cell disease.
Authority Magazine, a Medium publication, spoke with Ashley Valentine about her life and work in the sickle cell community.
The New York Times talks to the sickle cell community about upcoming gene therapies.
Press Release regarding Sick Cells and Innovation and Value Initiative (IVI)’s joint white paper published October 20, 2022
Sick Cells President and Co-Founder, Ashley Valentine, spoke with The New Yorker.
Our community has a lot to say. Read up on some personal views and perspective
from Sick Cells’ members and the SCD community.
Storytelling is a powerful advocacy tool that provides a platform for the SCD community to express concern over health challenges. This blog shares experiences of sickle cell disease advocates who have previously participated in Hill events, and highlights the immense value of advocacy through storytelling.
It’s February, and we are Feeling the Love at Sick Cells. For us, “Feeling the Love” goes beyond celebrating Valentine’s day. It is also a time to reflect on the love we share with one another. The love we receive from our family, friends, romantic partners, etc., brings comfort and emotional and physical safety; for SCD Warriors, that feeling is unmatched. This month we celebrate the people who continue to pour love into us every chance they get. This blog post highlights several voices from our Faces of SCD Storytelling series that have captured the power of love across the SCD community.
See an event you’re interested in? Join us.
May 1 - 3, 2023
The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills and connections they need to advance therapy development for their communities. RDDS 2023 focuses on collaboration – the foundation of success in rare disease research.
You will meet individuals, advocacy leaders, industry, and research experts who have been there and done it, over two days of in-person only panel discussions, hands-on workshops, and expert office hours.
Learn More and Register: HERE