When I was nine years old, I woke up one day with heavy swelling in my face. At first it was sporadic, but when fourth grade began, the swelling happened more frequently. Teachers thought I was just tired: “You need to go to sleep at a decent hour—8:00pm, right after MacGyver.” My mother took me to our pediatrician. He took a urine sample and found that I was spilling large amounts of protein. We were referred to a nephrologist at the Children's Hospital in Chicago. The nephrologist performed ...
TREND Community is honored to present two posters at the World Orphan Drug Congress USA 2022 on July 11-13 in Boston, MA. These two posters* use real-world evidence to amplify the voices of the communities represented: Mapping the Rare Caregiver Journey in Hypoxic-Ischemic Encephalopathy Using Real-World Insights From Social Media [https://drive.google.com/file/d/1NgeqEipJtR3YUXfAIZMpf8X5-oFyCw52/view?usp=sharing] Using Real-World Evidence to Understand the Diagnostic Journey of People Living ...
As a parent, the months before the birth of a child can be full of wonder, excitement, and apprehension. The health of the mother and child are often on the forefront of the expecting parents. The arrival of a new life includes daydreams of the future journey. For parents of a child with Hypoxic Ischemic Encephalopathy (HIE), the journey can be just as meaningful but extraordinarily challenging. In approximately 2 to 9 in every 1,000 live births, parents must come to terms with: “Your newborn ...
To kick off our "Sleep in Rare" Evidence Accelerator, TREND Community presented our poster titled "Extracting Real-World Insights From Social Media to Understand Narcolepsy and the Impact of Brain Fog" at The World Sleep 2022 in Rome, Italy March 11th to 16th. Click here [https://drive.google.com/file/d/1GiZFJ-uz0kKFGSs6zMCEppa1IW7IrNZx/view?usp=sharing] to download the poster with abstract and full reference list. If your rare disease community is impacted by sleep-related issues, contact us...
On Friday January 21st TREND Community launched its first Real-World Data Consortium in partnership with the gout community. Stories about the lived experiences of people with medical conditions can be an incredibly powerful tool to raise awareness. When spoken and heard, these stories can be instrumental in defining care, supplement diagnostic tools, and open doors for an improved quality of life. The great news is that a mountain of first person stories, comments, and conversations already e...
Dear Community, Despite some setbacks, disappointments, and unforeseen challenges, 2021 was a year of unprecedented growth for TREND. To kick-off off the year, we matched with Takeda Pharmaceutical Company Limited [https://www.takeda.com/] ("Takeda") through the MassChallenge HealthTech [https://masschallenge.org/programs-healthtech] program to advance Takeda’s shared commitment to fighting for rare disease patient communities and bringing treatments to patients faster. With generous sponsors...
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