States are not able to alter patent protections or set prices but Colorado is no longer waiting for the federal government to act. According to a recent article in…
WLNS Brooklyn Michigan is sharing news about Jaxon Meschke, a four-year-old boy with a rare disease called cystinosis. Jaxon’s body has been fighting the disease since he was six…
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…
In a press release by Parkinson's Canada; researchers in Canada wanted to unpack why some people first lose their sense of smell before developing Parkinson’s disease with age. While losing…
We still don't fully understand a number of rare diseases. A lack of awareness, lack of interest, and lack of funding all play a role, and medical professionals simply can't…
Researchers from the University of Lausanne and the Wellcome Sanger Institute have just published a new study in Molecular Systems Biology which uncovered how DNA can overcome genetic changes which are…
Komodo Health and PicnicHealth have just announced that they have partnered together in effort to combine their data and better serve patients. This data will then be made accessible to…
The seventy-seven-year-old patient, Mr. S., had lived with chest discomfort for twenty years. Since bypass surgery or stents were not an option, his cardiologist managed to ease his discomfort through…
In a study from the University of New Mexico, researchers found the majority of patients with nausea report immediate relief after using cannabis, while 96% of the users reported nausea…
684 words, 9% matched vs 1,329 words, 4% matched Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong…
Rare Bears started out as a small effort to support children with rare diseases. Now, it is a global non-profit that has an army behind it. This organization makes one-of-a-kind…
Pfizer’s Regional President for Rare Disease, Reda Guiha, recently offered his opinion to The Parliament magazine about the urgency of what he refers to as the ‘rare disease crisis.’ Pres.…
Intravenous immunoglobulin, or IVIG, is a therapy used for an array of autoimmune conditions. It has anti-inflammatory properties which help support many diseases. Recently, researchers have demonstrated the potential of…
Written by Kevin Schnurr A renal patient seeks clarity amidst ongoing, conflicting reports. It’s not every day I’m constantly reminded of my status as someone post-organ transplant, but…
A press release by MYND Sciences announced that the drug research and development company, MYND Life Sciences Inc. has their new intellectual patent for their method of finding biomarkers to…
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…
A recent study in MedicalXpress investigates a mutation that contributes to Parkinson’s-like symptoms in children. The mutation interrupts the movement of dopamine. The new study was conducted using fruit flies…
Dr. Duneel Dhand, an internal medicine physician and author, told KevinMD about two events in his life that motivated him to treat his patients with compassion. A Doctor’s Character As…
Diagnosis can be difficult to achieve for rare disease patients. Some patients experience years of searching for the correct diagnosis, with others receiving the wrong one along the way. Changes…
Pfizer Rare Disease is an approach taken by pharmaceutical giant Pfizer to develop treatments for rare and orphan diseases. In the past, the company has worked with the National Newspaper…
The diagnostic journey for rare disease patients can be long and frustrating. In fact, 28% of rare disease patients spent a minimum of seven years waiting for their diagnosis, and…
A majority of individuals who have strokes are over the age of 60. But what happens when younger individuals have unexplained strokes? What causes these to happen? According to a…
According to a recent article in MedCity News, families with children who have a rare disease wait on average for five years before receiving an accurate diagnosis. It is…
Rare disease research faces many obstacles: lack of participants, lack of funding, and lack of interest are just a few. Now, the charity Cerebra has launched a network to take…
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…
© 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.
