Rare Disease – Page 25 – Patient Worthy

source: pixabay.com

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

Post author:Rose Duesterwald
Post published:September 16, 2021
Post category:Rare Disease

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…

Proulain / Pixabay

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

Post author:Trudy Horsting
Post published:September 15, 2021
Post category:Rare Disease

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…

Compassion Comes in Many Different Forms and Unexpected Settings

Post author:Rose Duesterwald
Post published:September 15, 2021
Post category:Rare Disease

Today’s report on compassion describes it as the resolve to serve others. This article, published by the Schwartz Healthcare Center in Cambridge, Massachusetts, features Victor Furtado, Security Director at NewBridge…

source: pixabay.com

Study: Enzyme Appearance as a Driver Behind Preeclampsia

Post author:Kendall Mason
Post published:September 15, 2021
Post category:Antiphospholipid Syndrome Rare Disease

Understanding the driving factors behind a condition is necessary for the development of effective treatments. A recent study has advanced our understanding of preeclampsia, a rare complication that impacts five…

source: pixabay.com

College Students: In the Age of COVID, Don’t Overlook Meningitis

Post author:Alyssa Stevens
Post published:September 15, 2021
Post category:Bacterial meningitis meningitis Rare Disease

According to a recent article from CoventryLive, the nonprofit Meningitis Now is warning students and those going back to work to not make assumptions when they become ill. Students…

Improving Clinical Trials For Patient Convenience and Diversity

Post author:Rose Duesterwald
Post published:September 14, 2021
Post category:Rare Disease

Disruption in clinical trial procedures can be added to the list of changes that have occurred since the start of the pandemic in 2020. The clinical trial sites had always…

https://unsplash.com/photos/tV-RX0beDp8

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

Post author:Jessica Lynn
Post published:September 13, 2021
Post category:Cancer Rare Disease

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…

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

Post author:Rose Duesterwald
Post published:September 13, 2021
Post category:Castleman Disease Castleman's disease Rare Disease

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…

emrahozaras / Pixabay

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

Post author:Trudy Horsting
Post published:September 9, 2021
Post category:ADHD Rare Disease

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…

A Doctor Writes a Prescription to Regain Her Patients’ Trust

Post author:Rose Duesterwald
Post published:September 8, 2021
Post category:Rare Disease

Jordana Rothschild, M.D. recently contributed an article to KevinMD discussing the perception that patients have about their doctors. Dr. Rothschild believes that the system we have created gives people the…

jarmoluk / Pixabay

New Program Aims to Help Ultra-Rare Disease Research

Post author:Kendall Mason
Post published:September 7, 2021
Post category:Rare Disease

Rare diseases often need extra support when it comes to research and drug development. Luckily, MMS Holdings Inc. (MMS) plans to provide some with their new support program. The program,…

https://pixabay.com/en/technology-robot-human-hand-2025795/

AI Vastly Improves Enrollment in Rare Disease Clinical Trials

Post author:Trudy Horsting
Post published:September 3, 2021
Post category:Rare Disease WHIM syndrome

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…

source: pixabay.com

Understanding of Rare Cancer Cell Could Prevent Recurrence in Many Cancers

Post author:Trudy Horsting
Post published:September 3, 2021
Post category:Cancer Rare Disease

A recent study conducted by researchers at the Broad Institute of MIT and Harvard University uncovered that a small group of cancer cells is responsible for recurrence. Considering that most…

pixabay.com

MX1 Gene Mutations Increase H7N9 Avian Flu Susceptibility

Post author:Jessica Lynn
Post published:September 3, 2021
Post category:Rare Disease

Genetics play a huge role in health and disease development. Certain genetic mutations are associated with the development of specific conditions; for example, DMD gene mutations cause Duchenne muscular dystrophy.…

Pexels / Pixabay

New Guidebook for Caregivers of Children with Rare Diseases

Post author:Kendall Mason
Post published:August 31, 2021
Post category:Rare Disease

Patient Worthy was pleased to serve on the advisory committee for the development of this new resource. Caring for a child with a rare disease can be scary and confusing;…

NORD Summit to Take Place October 18-19, 2021

Post author:Jessica Lynn
Post published:August 31, 2021
Post category:Rare Disease

The National Organization for Rare Disorders (NORD) has been a leading patient advocacy organization since the 1980s, helping advance the identification, treatment, and cure of rare disorders. In October 2021,…

Focus Group: Improving Clinical Trials for Rare Disease Patients

Post author:Kendall Mason
Post published:August 31, 2021
Post category:Rare Disease

Rare disease patients often face more obstacles and receive less aid than those impacted by more common conditions. There are many reasons for this inequity, but more research must be…

fernandozhiminaicela / Pixabay

AllStripes Secures $50 Million for Rare Disease Research

Post author:Kendall Mason
Post published:August 26, 2021
Post category:Rare Disease

Developing therapies for rare diseases can be difficult, and it often requires effort from many different players. Recently, AllStripes has made large steps forward in rare disease research by securing…

source: pixabay.com

Clinical Hold Lifted on RP-A501 Trial for Danon Disease

Post author:Jessica Lynn
Post published:August 25, 2021
Post category:Rare Disease

During clinical trials, the FDA may sometimes order a clinical hold. This order is often given to halt or suspend trial operations if the FDA believes that participants would…

Compassion Corner: Compassion versus Depersonalization in Healthcare

Post author:Rose Duesterwald
Post published:August 12, 2021
Post category:Rare Disease

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…

source: pixabay.com

In the 1960s a Lobotomy Was the Only Option for Caren

Post author:Rose Duesterwald
Post published:August 10, 2021
Post category:Rare Disease SYNGAP1-related intellectual disability

When Caren was eighteen years old her parents were, in fact, given two options. If they were unwilling to consent to a lobotomy, Caren would remain in the dark ward…

source: pixabay,com

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

Post author:James Moore
Post published:August 4, 2021
Post category:Rare Disease Stevens-Johnson Syndrome

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…

source: pixabay.com

August is Autoinflammatory Awareness Month: Spreading Rare Disease Awareness

Post author:James Moore
Post published:August 4, 2021
Post category:Rare Disease

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…

Monkeypox Is In the United States

Post author:Kendall Mason
Post published:July 29, 2021
Post category:Rare Disease

Prior to this year, there were no reported cases of monkeypox in the United States since 2003. This all changed when a Texas man brought the rare disease back with…

source: pixabay.com

Compassion Corner: The Challenges and Barriers Are Universal

Post author:Rose Duesterwald
Post published:July 29, 2021
Post category:Rare Disease

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…

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

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

Compassion Comes in Many Different Forms and Unexpected Settings

Study: Enzyme Appearance as a Driver Behind Preeclampsia

College Students: In the Age of COVID, Don’t Overlook Meningitis

Improving Clinical Trials For Patient Convenience and Diversity

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

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

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

A Doctor Writes a Prescription to Regain Her Patients’ Trust

New Program Aims to Help Ultra-Rare Disease Research

AI Vastly Improves Enrollment in Rare Disease Clinical Trials

Understanding of Rare Cancer Cell Could Prevent Recurrence in Many Cancers

MX1 Gene Mutations Increase H7N9 Avian Flu Susceptibility

New Guidebook for Caregivers of Children with Rare Diseases

NORD Summit to Take Place October 18-19, 2021

Focus Group: Improving Clinical Trials for Rare Disease Patients

AllStripes Secures $50 Million for Rare Disease Research

Clinical Hold Lifted on RP-A501 Trial for Danon Disease

Compassion Corner: Compassion versus Depersonalization in Healthcare

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

August is Autoinflammatory Awareness Month: Spreading Rare Disease Awareness

Monkeypox Is In the United States

Compassion Corner: The Challenges and Barriers Are Universal

Let’s Work Together!

Keep Up to Date

Learn More