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.
At the very start of the new year, researchers out of the Washington University in St. Louis shared some exciting medical research: the discovery of two gene variants, associated with…
Each year, January 24 marks International Alagille Syndrome Awareness Day. During this day, organizations across the globe raise awareness around Alagille Syndrome (ALGS), from offering educational resources to allowing patients…
According to Medical XPress, researchers out of the Queen Mary University of London have been making strides in the field of medical research, particularly around pancreatic cancer. After identifying a…
In early January 2021, biopharmaceutical company Avidity Biosciences ("Avidity") announced updates from its 2021 pipeline. Currently, Avidity is working to create a line of Antibody Oligonucleotide Conjugates (AOCs), therapeutic options…
When breast cancer cells are biopsied, they are usually tested to determine if the cancer is hormone receptor-positive or hormone receptor-negative. Basically, if the cancer is hormone receptor-positive, estrogen and…
Oftentimes with cancers or rare conditions, there are subtypes of the cancer or disease. Breast cancer is no different. For example, a breast cancer diagnosis may encompass BRCA gene mutations or triple-negative…
On January 13, 2021, pharmaceutical company Marinus Pharmaceuticals, Inc. ("Marinus") shared via press release that the FDA gave the company a positive response following efficacy and safety data from the…
In a recent study, spearheaded by a team at the Postgraduate Institute of Medical Education and Research in Chandigarh, researchers determined that patients with non-cystic fibrosis (non-CF) bronchiectasis often had…
Research has shown that there is a relationship between type 2 diabetes and cardiovascular disease, an umbrella of diseases that include damaged blood vessels, blood clots, and other issues. In…
If you have a rare condition and are also looking to start a family, you might question: how will my condition impact my pregnancy? Will I be able to have…
Much of our news in 2020 was filled with headlines around COVID-19, the viral pandemic which now has over 96.2 million global diagnoses. As we enter into 2021, the numbers…
Have you ever heard a song and heavily related to it? As though it was speaking directly to you? This is how I felt when I first heard German singer-songwriter…
In October, I sat down with Laura and Ryan Nitahara to discuss their experience with Krabbe disease, a rare genetic lysosomal storage disorder and progressive neurological condition. Prompted by their…
In late December 2020, biopharmaceutical company AbbVie announced via press release that the prescribing information for IMBRUVICA (ibrutinib) is now updated to include long-term safety and efficacy data for…
On January 10, 2021, biotechnology company BioMarin Pharmaceutical Inc. ("BioMarin") shared positive data from its Phase 3 GENEr8-1 clinical trial. The clinical trial is evaluating an investigational gene therapy…
In a recent press release from mid-January 2020, the Pulmonary Fibrosis Foundation (PFF) announced that its registry, the PFF Registry, was being sponsored by biotechnology United Therapeutics. This sponsorship…
In an exciting press release, gene therapy platform company Lysogene announced that it had received approval from the Medicines and Healthcare products Regulatory Agency (MHRA) and Research Ethics Committee. As…
Did you know that a common food-borne illness might increase the risk of developing a type of rare brain cancer called glioma? According to Science Daily, a recent study suggests…
Recently, Pulmonary Hypertension News shared some burgeoning medical news: that the DNMT3B gene has now been linked to the development of pulmonary hypertension (PH) and a rare form of chronic high blood…
Waldenstrom macroglobulinemia (WM) is incredibly difficult to treat. In addition to having no cures, the condition only has one approved treatment option. However, researchers now believe that combining drugs, specifically…
According to ANCA Vasculitis News, the FDA recently approved Riabni (rituximab-arrx) for the treatment of adult patients with two specific subtypes of ANCA vasculitis: microscopic polyangiitis (MPA) and granulomatosis with…
In early January 2021, biopharmaceutical company BlueRock Therapeutics ("BlueRock"), in collaboration with the Memorial Sloan Kettering Cancer Center, announced via press release that its Investigational New Drug (IND) application for…
When you think of malaria, are mosquitos the first image that appears? While a microscopic parasite, Plasmodium falciparum, is responsible for malaria, mosquitos are often the vectors, carrying and transmitting…
In a recent press release, biopharmaceutical company Ultragenyx Pharmaceutical Inc. ("Ultragenyx") shared positive safety and efficacy data from Phase 1/2 clinical trials on gene therapy solutions for ornithine transcarbamylase…
In a press release from early January 2021, genetic medicines company Generation Bio Co. ("Generation Bio") announced data from a variety of studies. In one, the company shared that…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
