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.
Dr. Muna Naash received her PhD from Baylor College of Medicine, where she studied retinal cell and molecular biology. Throughout her career, Dr. Naash has become known for her work…
Before you read on, make sure to check out Part 1 of our interview. In Part 1, Kyla discusses the two-year diagnostic odyssey that brought her to the point of her Gleich…
The American College of Rheumatology (ACR) shares guidelines for disease management and care. According to Creaky Joints, the ACR recently released a new guideline centered around integrative interventions for people…
Rare Pediatric Disease designation (RPDD) is granted by the U.S. Food and Drug Administration (FDA) to drugs or biologics in development for rare pediatric diseases. In the United States, “rare”…
Make sure to read Part 1 of Kandise's story. In Part 1, she discusses some of the symptoms of hereditary multiple exostoses (HME), as well as how she finally reached a diagnosis.…
At nearly 33 years old, Kyla McGaughey has overcome more challenges that many people can imagine. Her medical journey began in 2019 and it took over two years for her…
Ready to read? Before you do, make sure to check out Parts 1 and 2 of Tracy's story. In Part 1, Tracy describes the symptoms that led her to pursue a diagnosis. Part 2…
Clinical trials can play a crucial role in understanding diseases, as well as identifying potential therapeutic options. This is especially important in newly identified or poorly understood conditions such as…
Prior studies have suggested that metformin, often used as a first-line treatment for people with type 2 diabetes (T2D0, could confer benefits for Rett syndrome. In particular, prior studies found…
Summer Wroniecki fell in love with dancing at a young age. At just 2.5 years old, she was already taking over the dance floor at Highland Dancing; her teachers were…
In the past, research has found connections between polycystic ovary syndrome (PCOS) and pancreatic cancer. For example, one study suggested that having PCOS could increase pancreatic cancer risk by…
Before you read on, make sure to check out Part 1 of Tracy's story. In Part 1, Tracy discusses the symptoms that led her to pursue a diagnosis and the multi-year diagnostic…
Lauren Bruccoleri and her husband Matthew weren’t initially planning on having their son Grayson. But when Lauren found out that she was pregnant, she was overjoyed. However, Lauren and Matthew…
When Kandise MacLeod was twelve years old, she began noticing various growths and tumors popping up on her bones. These sometimes caused pain or discomfort; in one case, Kandise even…
Before you read on, make sure to check out Part 1 of our interview with Christina ("Chris") Coates. In Part 1, we discussed Chris' Cavernous Malformation, surgery, and diagnostic journey to hypertrophic…
Seizures associated with conditions such as Dravet syndrome and Lennox-Gastaut syndrome (LGS) can be difficult to treat; these seizures may be treatment-averse and may not respond well to current anti-epileptic…
Have you heard of the pulmonary microbiota, which may also be referred to as the lung microbiome? This refers to the complex collection of microorganisms (bacteria, viruses, bacteriophages, fungi) that…
In 2018, Libby Porter welcomed her first child into the world. Her family was thrilled, especially her father John, who was so excited to have a granddaughter. But things…
Dr. Seth Lederman founded Tonix Pharmaceuticals with a deep desire to change the treatment landscape for patients. The company’s rich pipeline features therapeutic options for fibromyalgia, post-traumatic stress disorder (PTSD),…
Christina (“Chris”) Coates has lived a full, joyous, and fulfilling life. The Arizona native has built something beautiful: a family with two daughters, two cats, two dogs, and a loving…
Ten years ago, Tracy Kyttle moved from New England to the DC Metro Area to pursue a career in education leadership. She loved the area’s duality: its proximity to nature…
Before you read on, make sure to check out Part 1 of Laura's story. In Part 1, Laura shares the diagnostic journey, why her family is so rare, and what Carpenter syndrome…
On the field, Running Back (RB) Tevin Coleman has done some amazing things. He has played in 94 games, gained 3,319 rushing yards, and scored 25 touchdowns. Off the…
Before you read on, make sure to check out Part 1 of Savannah's story. In Part 1, Savannah's mom Lacey shared the diagnostic journey that led to Savannah's diagnoses: EoE, LGS, and…
For many people with a rare condition, sharing their story can be personally fulfilling—and it can help others realize that they are not alone. More so, shared stories can encourage…
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