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…
FoundationOne CDx is a comprehensive genomic profiling test that is tissue based. It is used to identify individuals diagnosed with ALK+ non-small-cell lung cancer (NSCLC) who will be eligible for…
The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this event is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…
The month of August has been recognized as Autoinflammatory Awareness Month since 2015. This event is centered on spreading awareness about autoinflammatory illnesses among the medical community and the general…
The name of the organization is Disease InfoSearch. It is not only a resource for credible information but guides patients and families to valuable support groups and participation in…
What do phenylketonuria (PKU), galactosemia, and maple syrup urine disease (MSUD) have in common? All three are considered inborn errors of metabolism, or rare genetic disorders in which the…
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…
Accessing treatments can be difficult, especially if one is impacted by a rare disease. In fact, only 5% of rare diseases have an FDA-approved treatment. Because of this, many patients…
Researchers at NYU Abu Dhabi (NYUAD) have discovered the code that is associated with the liver’s genome (complete set of DNA) and its ability to regenerate. According to a…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
ANGEL AID CARES began as the brainchild of Cristol Barrett O’Loughlin, out of a shared desire to pay tribute to her own family experience and to uplift others in need.…
The answer lies in the loss of endoplasmic reticulum (ER) calcium and protein which leads to cardiovascular, musculoskeletal, viral, and neurodegenerative diseases. ER performs many important cellular functions including…
Rare diseases face many obstacles when it comes to research and drug development. Small patient populations, a lack of awareness, and limited funding are just a few examples. When it…
According to a recent article in Genetic Engineering and Biotechnology News, the blood-brain barrier (BBB) regulates the movement of molecules, cells, and ions between the brain and the blood. Tightly…
Newborn screening is important to early diagnosis and intervention. With some conditions, every second counts. Catching a rare disease as soon as a child is born could lead to much…
Aurinia Pharmaceuticals has just announced that Otsuka Pharmaceutical Europe Ltd. (OPEL), their licensing partner, has just filed a Marketing Authorization Application for an investigative therapy for lupus nephritis (LN) called…
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…
RAREsummit21 October 7, 2021 CRDN's RAREsummit21 is designed as a platform for change. This is an opportunity to hear from and engage with the stakeholders that are creating change across…
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…
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…
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