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…
The 2021 Living Rare, Living Stronger Patient and Family Interactive Virtual Forum Featuring the Rare Impact Awards June 26-28, 2021 This forum is specifically geared to be a patient-centric event.…
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.…
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…
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…
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…
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 Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
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.…
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…
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…
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…
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…
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…
The Rare Disease Legislative Advocates (RDLA) held its monthly webinar on May 20, 2021. The primary focus of the webinar was a discussion and overview of drug pricing proposals 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…
Written by Harsha K. Rajasimha, MS, PhD & Sharlene Brown, PhD Clinical trials are the regulatory mechanisms agencies like the Food and Drug Administration (FDA) use to evaluate and review…
Research has identified that individuals with sleep issues are at a higher risk for developing chronic diseases. Unfortunately, many with sleep disturbances are undiagnosed. It's estimated that between 40 and…
RARE on the Road 2021: Rare Disease Leadership Tour Virtual Training and Networking: Illinois May 18, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since…
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