A child's life was recently saved thanks to ultra-ultra-rapid genome sequencing which provided him his rare disease diagnosis in just 13 hours. The Human Genome Project began 30 years ago…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
People are rushing to get in shape for summer; it's common to see the gyms a little more full than normal. While exercise is good for you, it's important not…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
As seen in a press release by Bioindustry; the UK BioIndustry Association (BIA) has published findings from a survey on the public’s interest in supporting rare access to affordable medicine…
A two-month-old baby recently traveled to Dubai to receive treatment at Al Zahra Hospital Dubai (AZHD), according to an article in the Khaleej Times. The child, who is from Oman,…
The Rare Disease Legislative Advocates (RDLA) webinar for the month of June took place on June 17, 2021. This month's webinar provided updates on a variety of legislative topics that…
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…
As reported in Charcot-Marie Tooth News; this year, Eurordis has kicked off a campaign to make sure those with rare diseases don’t get left behind in the coming century. Small…
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.…
As reported in PR Newswire, Alcyone Therapeutics is launching a new set of precise gene therapies for CNS disorders with the help of a new $23 million investment from RTW…
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…
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