Compassion Corner: Study Examines Ways to Approach Patients When Doctors Deliver ‘Bad News’
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Compassion Corner: Study Examines Ways to Approach Patients When Doctors Deliver ‘Bad News’

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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RDLA Webinar: Updates on the VALID Act, RUSP Alignment, Newborn Screening, and Precision Medicine for Kids
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RDLA Webinar: Updates on the VALID Act, RUSP Alignment, Newborn Screening, and Precision Medicine for Kids

On September 28, 2022, the Rare Disease Legislative Advocates (RDLA) hosted their monthly webinar. These webinar help provide updates to the rare disease community on legislation and other policy initiatives…

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An Invitation From Family Heart Foundation to Celebrate Familial Hypercholesterolemia Foundation Awareness Day
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An Invitation From Family Heart Foundation to Celebrate Familial Hypercholesterolemia Foundation Awareness Day

The Family Heart Foundation has a Mission. There is so much more to accomplish and you can help prevent heart attacks by spreading awareness. This could save future generations by…

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Science Simplified: How to Read a Scientific Paper, Part 3: Tips For Critically Assessing The Article
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Science Simplified: How to Read a Scientific Paper, Part 3: Tips For Critically Assessing The Article

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…

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Science Simplified: How to Read a Scientific Paper, Part 2: Breaking Down The Information
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Science Simplified: How to Read a Scientific Paper, Part 2: Breaking Down The Information

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…

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Science Simplified: How to Read a Scientific Paper, Part 1; Anatomy of a Research Article
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Science Simplified: How to Read a Scientific Paper, Part 1; Anatomy of a Research Article

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…

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Self-Advocacy and Attitude: How Anna Survives (and Thrives) in Her Life with Wegener’s Granulomatosis (Pt. 3)
Photo courtesy of Anna Smith

Self-Advocacy and Attitude: How Anna Survives (and Thrives) in Her Life with Wegener’s Granulomatosis (Pt. 3)

Before you read, make sure you check out Parts 1 and 2 of our interview. In Part 1, we discussed what Wegener's granulomatosis (GPA) is, Anna's diagnostic journey, and her first episode of symptoms.…

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How Quris is Aiming to Address Fragile X (and Other Rare Diseases) through Bio-AI Drug Development (Pt. 1)

Many people laud the accomplishments of clinical trials – and for, in some cases, good reason. Clinical trials have been crucial in identifying and developing therapeutic options for patients to…

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How “Voices” Offers a New Avenue of Connection for the Chronic Illness and Rare Disease Communities

It’s no secret that being a part of the chronic illness and/or rare disease community can sometimes be lonely and isolating. Many people, while empathetic to the challenges faced within…

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