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.
Unfortunately, it can sometimes be difficult to get companies to perform research and develop therapeutics for rare diseases, but the FDA came up with a process to spur research…
When Ivy Reed was just two weeks old, she was first diagnosed with two conditions: non-verbal autism and propionic acidemia, the latter of which is a rare metabolic disorder. Because…
Over the last few decades, there have been immense advancements in medical technology and care options. However, not all of these advancements contribute to better patient outcomes. For example, more…
This year, the National Lipid Association held its Scientific Sessions from June 2-5, 2022. During the Scientific Sessions, attendees discussed new research, clinical best practices, and other topics within this…
Did you know that atrial fibrillation (AF) increases the risk of a stroke by 3 to 5 times? However, blood thinners such as warfarin, or other potential treatments, can protect…
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, diagnose, or prevent rare or life-threatening diseases or conditions. Rare conditions are those affecting…
Don't forget to take a look at Part 1 of our interview, where Jessica discussed her trigeminal neuralgia journey, what this condition is, and why she decided to start the…
There is no doubt that artificial intelligence (AI) is going to change the future of healthcare. AI can be used in disease prediction, treatment, identification, diagnosis, and management. For example,…
Before you read Part 2 of Lindsey's interview, make sure to go back and take a look at Part 1! In Part 1, we discussed Finn, the diagnostic journey for…
Altogether, an estimated 15-30% of people around the globe have nonalcoholic fatty liver disease (NAFLD), a condition in those who drink very little or not at all which mimics liver…
When you think about a visit to the dentist, it may – at first – seem innocuous, something that you need to take care of for your health. But for…
The EULER 2022 Congress took place this year from June 1st-4th, 2022. During that time, rheumatology professionals met to discuss trends, guidelines, and patient care within the field of rheumatology.…
For as long as she can remember, Destiny Fiaschetti has been incredibly committed to becoming a foster parent. She dreamed of providing a home for children in need, especially those…
At the beginning of our interview, Lindsey Curley explains to me that there is a difference between listening and understanding. Listening is important, of course; she wants people to listen…
The future of healthcare is going to be changed and impacted by the use of artificial intelligence (AI), hopefully in beneficial ways. According to an article from McMaster University, researchers…
This year, the Congress of Clinical Rheumatology East took place from May 12-15, 2022. During the conference, clinical rheumatologists gathered to discuss trends in rheumatology, practice guidelines, and cutting-edge therapeutics.…
In the United States, the FDA grants Orphan Drug designation to drugs or biologics intended to treat, prevent, or diagnose rare diseases or conditions. Do you know what makes a…
In clinical trials evaluating Zolgensma for children with spinal muscular atrophy (SMA), the maximum weight of participants was 18.7 pounds. However, parents with children weighing over that weight might be…
At just two days old, Leita’s son Glyn started having infantile spasms. For the next sixteen years, Glyn’s seizures worsened. Leita also had two other children – twins named Asha…
When Alicia McLeod entered her 20s, she began noticing that she was showing a few concerning symptoms. Eventually, Alicia visited the doctors, where she was diagnosed with syringomyelia. According to…
Currently, no approved treatment options exist for children with pediatric low-grade glioma, the most common brain tumor found in children. However, shares Day One Biopharmaceuticals ("Day One") in a news…
In the past, research has shown that bleach baths can be a helpful tool in addressing or relieving symptoms associated with dermatological issues. For example, some doctors suggest the use…
When Lauren Atkins and William Bromley welcomed their son Charlie into their lives, they were thrilled. Jessie, their daughter, may have been even more thrilled, already having a soft spot…
In the United States, a rare disease or condition is one which affects fewer than 200,000 individuals. Alternately, a rare condition in the European Union (EU) is considered one which…
Personable. Loving. Impactful. Those are all words that Angie Kane would use to describe her son Colton, who passed away at 21 years old in October 2021. When Angie talks…
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