Compassion Corner: This Patient Didn’t Let a Hurtful Incident Ruin Her Appreciation for the Compassionate Care She Received From Other Nurses
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Compassion Corner: This Patient Didn’t Let a Hurtful Incident Ruin Her Appreciation for the Compassionate Care She Received From Other Nurses

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…

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The 2021 Rare Disease Week Discussed Policies Which Could Improve The Lives of Rare Disease Patients
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The 2021 Rare Disease Week Discussed Policies Which Could Improve The Lives of Rare Disease Patients

Rare Disease Week this year was July 14th-22nd and held virtually. With over 600 participates advocating for those living with a rare disease diagnosis and 250 patient organizations, this event’s…

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First Patient Dosed in Pidnarulex Study for Solid Tumors with HR Mutations
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First Patient Dosed in Pidnarulex Study for Solid Tumors with HR Mutations

Homologous Recombination (HR) gene mutations play a role in genomic stability and plasticity, and sometimes work to repair cellular DNA damage. These mutations cause genetic information to be shared between…

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Patients and Families are Currently Relying on Community Funding for Rare Diseases

An article recently appeared in the AAMC News celebrating the creation of The Children’s National Rare Disease Institute (CNRDI). The article described the long road patients with rare diseases must…

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Sleep Deprivation Functioning Deficits Can Last For Over a Week, New Study Finds
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Sleep Deprivation Functioning Deficits Can Last For Over a Week, New Study Finds

A recent study investigated the lingering effects of sleep deprivation in healthy adults. This study was conducted by Jeremy Ochab from Poland, alongside his colleagues. Sleep Deprivation Sleep deprivation or…

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AI Vastly Improves Enrollment in Rare Disease Clinical Trials
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AI Vastly Improves Enrollment in Rare Disease Clinical Trials

Clinical trial recruitment has always been challenging. It is especially challenging for therapies being tested for rare diseases, an already small population. Clinical trials for rare diseases are small out…

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August is Stevens-Johnson Syndrome Awareness Month: Spreading Rare Disease Awareness
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August is Stevens-Johnson Syndrome Awareness Month: Spreading Rare Disease Awareness

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…

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