Rare Cancer Archives - Patient Worthy

Rare Community Profiles: “A Ballsy Sense of Tumor:” How Justin’s Testicular Cancer Diagnosis Led Him to Advocacy Around Men’s Health

Post author:Jessica Lynn
Post published:December 13, 2023
Post category:Testicular Cancer

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

1 in 10 Million: 20-Year-Old Diagnosed with Stage IV Neuroblastoma

Post author:Jessica Lynn
Post published:November 21, 2023
Post category:Neuroblastoma

Ask any doctor about neuroblastoma and they'll tell you: this rare cancer, which forms from immature nerve cells, predominantly affects children who are five years old or younger. So when…

Photo by sydney Rae on Unsplash

Care Assessment Need (CAN) Score Could Improve Care for Veterans with Basal Cell Carcinoma

Post author:Jessica Lynn
Post published:November 10, 2023
Post category:Basal cell carcinoma- infundibulocystic

Coordinating medical care can be complex, especially when you are older. If you are dealing with a health condition like cancer, you might be wondering: how long can/will I…

Source: Pixabay

Wilms’ Tumor Survivor Celebrates 9th Birthday

Post author:Jessica Lynn
Post published:November 8, 2023
Post category:Wilms' tumor

Two years ago, the Lazo family was shocked to learn that daughter Cassie, then seven, had cancer. She was diagnosed with Wilms’ tumor, a rare form of childhood kidney cancer…

source: shutterstock.com

Analysis: Reasons for Small Cell Lung Cancer Patients Refusing Treatment

Post author:Rose Duesterwald
Post published:November 8, 2023
Post category:Small cell lung cancer

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

95C / Pixabay

CyGenica Nabs Orphan Drug Status with Novel Drug Conjugate for Glioblastoma

Post author:Jessica Lynn
Post published:September 14, 2023
Post category:Glioblastoma

370 words (source - 3% match) vs. 496 words (mine - 2% match) GEENIE can be used to develop in vitro and in vivo delivery mechanisms for drugs, gene editing…

1041483 / Pixabay

Help This Family Whose Baby Has ATRT

Post author:Jessica Lynn
Post published:June 27, 2023
Post category:Atypical Teratoid Rhabdoid Tumor

Nobody expects to hear that their child, especially their baby, has cancer. But that is just what Chris and Carney Miller were faced with in 2023. The Miller family…

skeeze / Pixabay

Zanidatamab Could Treat HER2 Mutated Bile Duct Cancer

Post author:Jessica Lynn
Post published:June 21, 2023
Post category:Bile duct cancer Cholangiocarcinoma

Zanidatamab is an investigational IgG1 bi-specific monoclonal antibody that targets two non-overlapping HER2 domains. HER2 is overexpressed in a variety of cancer types such as breast cancer and esophageal cancer.…

source: shutterstock.com

Preclinical Study Data on TTX-MC138 for Glioblastoma Accepted for Publication

Post author:Jessica Lynn
Post published:June 21, 2023
Post category:Glioblastoma

TransCode Therapeutics, Inc. (“TransCode”) was founded with a mission to revolutionize the cancer treatment landscape and improve patient outcomes. The company is currently working to uphold this mission through the…

derneuemann / Pixabay

Penile Cancer Trial Enrolls 100 Participants

Post author:Jessica Lynn
Post published:June 14, 2023
Post category:Penile cancer- adult

Sometimes it can be difficult to talk about our health. For people living with genital cancers, there are sometimes additional burdens: a fear of discussing a "taboo" topic, concerns…

https://pixabay.com/en/nerve-cell-neuron-brain-neurons-2213009/

Preclinical Data Suggests uTREAT Could Be Used for Glioblastoma

Post author:Jessica Lynn
Post published:June 13, 2023
Post category:Glioblastoma

Given that glioblastoma tumors are capable of making their own blood supply, these tumors are often aggressive and difficult to treat. The current standards-of-care are still relatively ineffective. As…

source: shutterstock.com

That’s My Word: Spreading Multiple Myeloma Awareness in the Black Community

Post author:James Moore
Post published:May 16, 2023
Post category:Multiple Myeloma

Marsha Calloway-Campbell lives a full life as a lawyer, business owner, wife to her husband Armaray, mother to her three adult daughters, and “Naun” to her toddler grandson. But her…

mcmurryjulie / Pixabay

Axitinib-Avelumab Combination Prompted Responses in Recurrent or Metastatic Adenoid Cystic Carcinoma (ACC)

Post author:Jessica Lynn
Post published:March 27, 2023
Post category:Adenoid Cystic Carcinoma

While the five-year survival rate for adenoid cystic carcinoma (ACC) is relatively high, this cancer has a high risk of recurrence. Therapeutic options are needed to manage this cancer and…

source: pixabay.com

Family Raises Awareness After Daughter’s LCH Diagnosis

Post author:Jessica Lynn
Post published:March 14, 2023
Post category:Langerhans Cell Histiocytosis

Vivienne (“Vivi”) Horton has always been a bright and kind, albeit a bit shy and quiet, little girl. So her parents, Valerie and Terry, noticed when she wasn’t acting quite…

ColiN00B / Pixabay

Temferon Granted Orphan Drug Designation for Glioblastoma

Post author:Jessica Lynn
Post published:March 6, 2023
Post category:Glioblastoma

Currently, a glioblastoma multiforme (also known simply as glioblastoma or GBM) diagnosis comes with a poor prognosis. There is a 40% survival rate after one year which falls to…

fernandozhiminaicela / Pixabay

Researchers Discover Mechanism for Triggering the Death of Cancer Cells

Post author:Rose Duesterwald
Post published:February 22, 2023
Post category:Cancer

Researchers are closing in on cancer from every angle. Recently a team at the Colorado University (CU) Cancer Center has been focusing on p53, a common gene mutation found…

Unsplash: https://unsplash.com/photos/58Z17lnVS4U

Help this Father Fight Oligodendroglioma!

Post author:Jessica Lynn
Post published:February 6, 2023
Post category:Oligodendroglioma

Friends and family refer to 41-year-old Teddy Higgins as kind, selfless, and loving. Given all of his support for others, his friends and family are now working to support Teddy…

https://pixabay.com/en/dollar-currency-money-us-dollar-499481/

Family Fundraises to Support Son with Neuroblastoma

Post author:Jessica Lynn
Post published:February 2, 2023
Post category:Neuroblastoma

When Leonidas Boyne was born, he seemed—for all intents and purposes—to be a healthy, happy child. At five months old, he is still a bubbly, happy baby with a smile…

https://pixabay.com/en/nerve-cell-neuron-brain-neurons-2213009/

Azeliragon for Glioblastoma Earns Orphan Drug Designation

Post author:Jessica Lynn
Post published:January 27, 2023
Post category:Glioblastoma

Have you ever heard of Orphan Drug designation? This designation is granted by the U.S. Food and Drug Administration (FDA) to drugs or biologics intended to diagnose, prevent, or…

kfuhlert / Pixabay

ITI-3000 for Merkel Cell Carcinoma Earns Fast Track Designation

Post author:Jessica Lynn
Post published:January 13, 2023
Post category:Merkel cell cancer

In the United States, Fast Track is the process designed to facilitate the development, and speed up the review, of therapies designed to fill an unmet need or treat…

source: pixabay.com

CAR-T Cell Therapy is Changing the Future of Medicine as We Know It

Post author:Rose Duesterwald
Post published:December 22, 2022
Post category:Mantle Cell Lymphoma Multiple Myeloma

Med City News published an article by Bruce Feinberg, M.D. at Cardinal Heath, examining CAR-T treatments and the impact they have had in medicine during the past five years. CAR-T's…

Gene Alterations in Rare Cancers Could Allow for Earlier Diagnosis of Hereditary Cancers

Post author:Rose Duesterwald
Post published:November 21, 2022
Post category:Cancer Rare Cancer

Reports by experts find approximately five to ten percent of cancers may be traced to hereditary genetic changes (germline mutations) which exist in each and every cell. Instead, research in…

Photo courtesy of Brittany

Advocating for Cancer Biomarker Testing: How Brittany Turned her RET+ NSCLC Diagnosis into Action (Pt. 2)

Post author:Jessica Lynn
Post published:November 18, 2022
Post category:Rare Disease

Before you read further, make sure to check out Part 1 of our interview, where Brittany discusses what non-small cell lung cancer (NSCLC) is, her diagnostic journey, and how she learned that…

Photo courtesy of Brittany

Advocating for Cancer Biomarker Testing: How Brittany Turned her RET+ NSCLC Diagnosis into Action (Pt. 1)

Post author:Jessica Lynn
Post published:November 17, 2022
Post category:non-small cell lung cancer NSCLC

On the one-year anniversary of her RET+ non-small cell lung cancer (NSCLC) diagnosis, 37-year-old Brittany Hawkins had spent some time reflecting on her journey. When she was just seventeen years…

Hans / Pixabay

Researchers Build Deeper Understanding of Mucinous Ovarian Cancer

Post author:Jessica Lynn
Post published:November 15, 2022
Post category:Ovarian Cancer

Researchers and scientists have stated that it can be difficult to diagnose and treat patients with mucinous ovarian cancer. In fact, because the cancer is often not found until it…

Rare Community Profiles: “A Ballsy Sense of Tumor:” How Justin’s Testicular Cancer Diagnosis Led Him to Advocacy Around Men’s Health

1 in 10 Million: 20-Year-Old Diagnosed with Stage IV Neuroblastoma

Care Assessment Need (CAN) Score Could Improve Care for Veterans with Basal Cell Carcinoma

Wilms’ Tumor Survivor Celebrates 9th Birthday

Analysis: Reasons for Small Cell Lung Cancer Patients Refusing Treatment

CyGenica Nabs Orphan Drug Status with Novel Drug Conjugate for Glioblastoma

Help This Family Whose Baby Has ATRT

Zanidatamab Could Treat HER2 Mutated Bile Duct Cancer

Preclinical Study Data on TTX-MC138 for Glioblastoma Accepted for Publication

Penile Cancer Trial Enrolls 100 Participants

Preclinical Data Suggests uTREAT Could Be Used for Glioblastoma

That’s My Word: Spreading Multiple Myeloma Awareness in the Black Community

Axitinib-Avelumab Combination Prompted Responses in Recurrent or Metastatic Adenoid Cystic Carcinoma (ACC)

Family Raises Awareness After Daughter’s LCH Diagnosis

Temferon Granted Orphan Drug Designation for Glioblastoma

Researchers Discover Mechanism for Triggering the Death of Cancer Cells

Help this Father Fight Oligodendroglioma!

Family Fundraises to Support Son with Neuroblastoma

Azeliragon for Glioblastoma Earns Orphan Drug Designation

ITI-3000 for Merkel Cell Carcinoma Earns Fast Track Designation

CAR-T Cell Therapy is Changing the Future of Medicine as We Know It

Gene Alterations in Rare Cancers Could Allow for Earlier Diagnosis of Hereditary Cancers

Advocating for Cancer Biomarker Testing: How Brittany Turned her RET+ NSCLC Diagnosis into Action (Pt. 2)

Advocating for Cancer Biomarker Testing: How Brittany Turned her RET+ NSCLC Diagnosis into Action (Pt. 1)

Researchers Build Deeper Understanding of Mucinous Ovarian Cancer

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

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