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…
The medical term for an “informal caregiver” describes a person who willingly takes the responsibility to help a spouse, family member, friend, or partner. The level of care and responsibility…
Within the United Kingdom, there's a program titled the Innovative Licensing and Access Pathway (ILAP), which is meant to give patients earlier access to developing treatments. The first step to…
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…
On June 10, 2022, Patient Worthy partner GACI Global hosted an hour long webinar on the subject of hearing loss, featuring Dr. Karen Wilber. GACI Global is a nonprofit organization…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
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…
According to a recent article, the European Society of Cardiology has recommended that athletes undergo gene testing to prevent sudden cardiac death from exercise. Gene Testing Lethal variants can be…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
According to a recent article in The British publication The Economic Times, a group of researchers at McMaster University have a win-win proposal for myotonic dystrophy (MD) patients. Eleven people were…
Getting a rare disease diagnosis can be difficult and take a long time. This can be a problem, as time is something that those with progressive illnesses don't have much…
According to a recent article, a new study where SIOD patients had a dual immune/solid organ transplant yielded positive results with patients accepting their new kidneys without rejection. Schimke Immune-Osseous…
According to a recent press release from Biospace, the first cohort of the ReSPECT-LM trial has officially completed enrollment. This trial focuses on Rhenium-186 NanoLiposome (186RNL) as a treatment for…
Medscape has recently reported on a new supplemental approval from the FDA for setmelanotide, which is a treatment for obesity associated with Bardet-Biedl syndrome (BBS). Now, BBS patients who are…
The month of June is recognized as Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month, a time to spread awareness about the rare condition among the general public and the medical…
Have you ever awoken in bed and thought that what happened the day before must have been a nightmare? It CANNOT possibly be true that I have a rare disease…
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…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
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.…
Kelly Heger, founder of the AADC Family Network, shares her story of becoming a nurse to take care of her daughter with AADC deficiency. When my daughter, Jillian, was born…
Cogent Biosciences has just released promising initial data from their Phase 2 clinical trial called APEX. This trial is investigating bezuclastinib, a selective KIT D816V inhibitor, as a treatment for…
Inherited retinal diseases (IRDs) are a group of genetic ocular disorders characterized by vision loss or blindness. A few examples are retinitis pigments (RP) and Usher syndrome. There has been…
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