This article was originally published on Ask the Patient. Welcome to the inaugural post of “Ask the Patient.” As a cancer survivor who has experienced medical gaslighting, medical bias, negligent…
Written by Matt DeGooyer, Lupus Foundation of America Lupus affects over one million Americans, with around 16,000 cases being diagnosed each year. It is an autoimmune disease that causes the…
The 2022 Medscape Physician Suicide Report shows that physicians, compared to the general public, have double the rate of suicides. Amna Shabbir, a doctor of internal medicine, felt compelled…
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…
Dr. Amish Desai speaks with the utmost sincerity on KevinMD's recent podcast. The doctor explained the difficulty he encountered trying to balance treatment for his father while giving the same quality…
Munique Slongo is a rare disease patient diagnosed with Fabry disease. She has taken the time to share her story about what life with this diagnosis has been like. Fabry…
Jordana Rothschild, M.D. recently contributed an article to KevinMD discussing the perception that patients have about their doctors. Dr. Rothschild believes that the system we have created gives people the…
Rare disease patients often face more obstacles than others when it comes to healthcare. While we know this, it can be hard to judge the public's stance on the issue.…
A survey created by Eurodis, a European rare disease advocacy alliance, has shown that those living with a rare disease have a worse healthcare experience than people with a chronic…
We've seen it time and time again in the news - stories of patients being treated differently, not believed by doctors, or significantly harmed by illnesses simply because of…
The Annals of the American Thoracic Society have recently released an article that evaluates how the COVID-19 pandemic disproportionately affects those who have already dealt with health inequities throughout history,…
Recently, Canada made strides towards better, more accessible treatments for patients with beta thalassemia when they approved REBLOZYL (luspatercept). Biopharmaceutical companies Bristol Myers Squibb Canada ("BMS Canada") and Acceleron Pharma…
Being a healthcare worker can be difficult: long hours, lots of moving parts, exposure to many patients and illnesses, and tons of policies and procedures to follow. But being a healthcare worker…
Recently, NPR's All Things Considered discussed a troubling story on the show: rapidly increases diagnoses, and fatalities, of healthcare workers stemming from COVID-19. The novel coronavirus was declared a pandemic in…
Getting a diagnosis for a rare disease is hard. Not many people are familiar with the many obscure symptoms and manifestations of these diseases. Because of this, patients with rare…
What can you do with half an hour? That’s the question that a new Canadian program asks. An online program called #30MinutesThatMatter gives Canadian patients an opportunity to share how…
International Alliance Of Patients' Organizations hosts the 8th Global Patients Congress. 200 reps from different healthcare facets will provide expertise, connection, and knowledge related to patient healthcare. Registration is INVITE…
Last month, 125 rare disease patient organizations sent a letter to Medicaid directors from individual states highlighting the importance of Medicaid access for rare disease patients. "As organizations representing millions…
As the United States Senate gears up to vote on whether to pass their version of the Republican-crafted tax reform legislation (the House of Representatives has already passed their version),…
The Chinese government is set to publish its first comprehensive list of rare diseases, with the aim to help policymakers improve diagnoses and speed up drug approvals. This comes on…
Si usted está considerando el embarazo, mientras gestionas tu espondilitis anquilosante, es posible que tenga muchas preguntas, tales como ¿Va a tener el dolor de espalda típico que las mujeres…
If you are considering pregnancy while managing ankylosing spondylitis, you may have a lot of questions, such as will you have the typical back pain that most pregnant women have, or…
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