Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
Before you read on, make sure to check out: Part 1 of our article: Green Bay Packers' Shemar Jean-Charles and Los Angeles Chargers' Storm Norton discuss why they raise Alzheimer's disease…
Simeon Fryer was elected captain of the Texas A&M University Corpus Christi (TAMUCC) Islanders men’s basketball team for the 2022-23 season – and it’s a job that he takes very…
At 41 years old, Teddi Mellencamp has done many great things in her life. The daughter of singer-songwriter John Mellencamp, Teddi is a successful podcast host and a reality television…
Before you read on, make sure to check out Part 1 of our article. In Part 1, Green Bay Packers Cornerback Shemar Jean-Charles discusses why he supports the Alzheimer's Association and how…
Currently, C5 inhibitors such as eculizumab and ravulizumab are considered the standard-of-care for people living with paroxysmal nocturnal hemoglobinuria (PNH). Unfortunately, not all patients respond well to these therapies.…
Throughout his life, Gavin Miller has overcome many struggles. As a young child, Gavin always loved hockey. But when he was in a hockey program at age four, he…
While alveolar soft part sarcoma (ASPS) is considered to be relatively slow-growing, it is necessary to carefully manage this rare soft tissue sarcoma to avoid metastasizing. Surgery is one…
The 65th American Society of Hematology (ASH) Annual Meeting took place from December 10-13, 2022. During the meeting, stakeholders in the hematology field came together to discuss trends, research,…
From September to January each year, our home transforms; each Sunday, my boyfriend and I meticulously set up our living room, make snacks, and spend the day watching football on…
Shelby Harris is no stranger to facing challenges; throughout his football career, Harris has remained as a strong and steady defensive lineman with a career 22.5 sacks as a pass…
Before you read on, don't forget to check out Part 1 of our interview. In Part 1, Alex discusses the multi-year diagnostic odyssey to discover that Raymond has VAMP2. Today, we talk…
Before you read on, don't forget to check out Part 1 of the story. In Part 1, Whitney talks about what CDKL5 deficiency disorder (CDD) is and the diagnostic journey for her…
In the United States, rare diseases are defined as those affecting fewer than 200,000 people. In the cases of ultra-rare conditions, there is often even less research, less resources, and…
Determining the safest, best, and most effective therapeutic options for patients is crucial to improving outcomes and ensuring optimal health. As shared in a story from MD Edge, researchers…
As our understanding of genetics continues to grow, new gene variants are being identified and linked to the development of various diseases. According to Medical XPress, a research team from…
Unfortunately, the prognosis associated with glioblastoma is poor; some studies suggest that survival rates are 40% within one year of diagnosis and 17% within two years, with less than 7%…
Before you read on, don't forget to check out Part 1 of our interview. In Part 1, Wendy discusses what hypertrophic cardiomyopathy (HCM) is, her rare variant, the diagnostic journey, and her…
A year after her daughter Havilah was diagnosed with CDKL5 deficiency disorder (CDD), Whitney Mitchell’s pediatrician looked her in the eyes and said something that Whitney still carries with her…
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Growing up, Priscilla Veneklause watched as her father struggled to manage his rare genetic disorder: adrenoleukodystrophy (ALD). Unfortunately, her father lost his fight with ALD when Priscilla was still…
Each week, in an email to his team, Albireo Pharma CEO Ron Cooper sends out the story of a child or family affected by conditions such as PFIC or Alagille…
Wendy Borsari is not just a patient living with hypertrophic cardiomyopathy (HCM); she is also a mother, a fierce advocate, and part of the patient advocacy team at Tenaya Therapeutics,…
When the COVID-19 pandemic swept the world, nobody knew what the short- or long-term effects would be. Now, a few years into the pandemic, we’ve begun understanding some of…
There are a number of different forms of congenital hyperinsulinism, along with a variety of different causes: a mother’s unmanaged diabetes, premature birth, gene mutations. But up to half…
Prior studies have found a correlation between inflammatory bowel disease (IBD) and colorectal cancer; those with IBD are at an increased risk of developing this cancer compared to the…
When Jordan Lambropoulos was younger, she seemed to always be ill. She struggles to remember a time in her childhood where she would characterize herself as “healthy.” Even doctors…
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