series Archives - Page 2 of 19

Rare Community Profiles: From Stage 4 Cholangiocarcinoma to Cancer-Free in 12 Months: How Hepatic Artery Infusion (HAI) Changed Rick’s Trajectory

Post author:Jessica Lynn
Post published:February 8, 2024
Post category:Bile duct cancer Biliary tract cancer Cholangiocarcinoma

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.…

source: pixabay.com

February is Turner Syndrome Awareness Month: Spreading Rare Disease Awareness

Post author:James Moore
Post published:February 7, 2024
Post category:Turner Syndrome

The month of February is recognized as Turner Syndrome Awareness Month, a time to spread awareness about this rare disease among the medical field and the general public. The Turner…

Fotocitizen / Pixabay

Rare Community Profiles: Dr. Pisit “Duke” Pitukcheewanont Discusses Phase 2 Results in LUM-201 for Pediatric Growth Hormone Deficiency

Post author:Jessica Lynn
Post published:February 6, 2024
Post category:Growth hormone deficiency Pediatric Growth Hormone Deficiency (GHD)

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.…

source: pixabay.com

Study of the Week: Contaminated Bedding Doubles Risk of C. Diff

Post author:James Moore
Post published:February 5, 2024
Post category:C. Diff

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…

source: shutterstock

Rare Classroom: Metastatic Urothelial Cancer

Post author:James Moore
Post published:February 2, 2024
Post category:Bladder cancer Urothelial Carcinoma

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Fotocitizen / Pixabay

Rare Community Profiles: How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disease Space

Post author:Jessica Lynn
Post published:January 31, 2024
Post category:Carnitine palmitoyl transferase 2 deficiency Rare Disease

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.…

source: pixabay.com

Study of the Week: Omega-3 Fatty Acids Could Slow Pulmonary Fibrosis

Post author:James Moore
Post published:January 29, 2024
Post category:Idiopathic Pulmonary Fibrosis

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…

forcal35 / Pixabay

RDLA Webinar: Rare Disease Policy Priorities for 2024

Post author:James Moore
Post published:January 26, 2024
Post category:Rare Disease

On January 18, 2024, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…

source: shutterstock

Rare Classroom: Autoimmune Hemolytic Anemia

Post author:James Moore
Post published:January 26, 2024
Post category:Autoimmune hemolytic anemia

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Fotocitizen / Pixabay

Rare Community Profiles: Peggy Lillis’ Legacy: How the End of an Extraordinary Life Launched a Foundation for C. Diff Education, Awareness, and Policy

Post author:Jessica Lynn
Post published:January 24, 2024
Post category:Aarskog-Scott syndrome C. Diff

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.…

source: shutterstock.com

Rare Community Profiles: A Conversation with Rallybio CEO Stephen Uden on the Need for Rare Disease Drug Development

Post author:Jessica Lynn
Post published:January 23, 2024
Post category:Fetal and neonatal alloimmune thrombocytopenia

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.…

source: shutterstock

Rare Classroom: Idiopathic Hypersomnia

Post author:James Moore
Post published:January 19, 2024
Post category:Idiopathic Hypersomnia

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

source: shutterstock.com

Rare Community Profiles: Fighting for Women’s Fertility: How Amanda Translated Her 3 Cancer Diagnoses into Empowerment

Post author:Jessica Lynn
Post published:January 18, 2024
Post category:Breast Cancer Melanoma

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.…

source: pixabay.com

Study of the Week: A Possible Treatment Target for CDKL5 Deficiency Disorder

Post author:James Moore
Post published:January 15, 2024
Post category:Familial Hypercholesterolemia Lysosomal Acid Lipase Deficiency

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…

source: shutterstock

Rare Classroom: Cervical Cancer

Post author:James Moore
Post published:January 5, 2024
Post category:Cervical Cancer

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

source: shutterstock

Rare Classroom: Cutaneous T-Cell Lymphoma

Post author:James Moore
Post published:December 29, 2023
Post category:Cutaneous T-cell Lymphomas

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…

source: shutterstock

Rare Classroom: Paroxysmal Nocturnal Hemoglobinuria

Post author:James Moore
Post published:December 22, 2023
Post category:paroxysmal nocturnal hemoglobinuria

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…

source: shutterstock

Rare Classroom: Autoimmune Autonomic Ganglionopathy

Post author:James Moore
Post published:December 15, 2023
Post category:Autoimmune autonomic ganglionopathy

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

source: shutterstock.com

Rare Community Profiles: The Enemy Inside Me: Brandi’s Journey of Hope and Survivorship After Ewing Sarcoma

Post author:Jessica Lynn
Post published:December 14, 2023
Post category:Ewing's family of tumors

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.…

Fotocitizen / Pixabay

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.…

source: shutterstock.com

Rare Community Profiles: Every Day for MBC: What Laura Wants You to Know about Metastatic Breast Cancer

Post author:Jessica Lynn
Post published:December 12, 2023
Post category:Metastatic Breast 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.…

source: pixabay.com

Study of the Week: Lysosomal Acid Lipase Deficiency in Japan

Post author:James Moore
Post published:December 11, 2023
Post category:Familial Hypercholesterolemia Lysosomal Acid Lipase Deficiency

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…

Photo courtesy of GACI Global

Rare Community Profiles: Creating a Strong Patient Advocacy-Pharma Partnership: How Inozyme Pharma and GACI Global Came Together for Impact

Post author:Jessica Lynn
Post published:December 6, 2023
Post category:Generalized arterial calcification of infancy-1 (GACI1)

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.…

source: shutterstock

Rare Classroom: Schindler Disease

Post author:James Moore
Post published:December 1, 2023
Post category:Schindler disease

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Photo courtesy of Tony L.

Rare Community Profiles: Battling Renal Cell Carcinoma and Oligodendroglioma Led Tony to Found a Nonprofit for Families Fighting Cancer

Post author:Jessica Lynn
Post published:November 21, 2023
Post category:Oligodendroglioma Renal Cell Carcinoma

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.…

Rare Community Profiles: From Stage 4 Cholangiocarcinoma to Cancer-Free in 12 Months: How Hepatic Artery Infusion (HAI) Changed Rick’s Trajectory

February is Turner Syndrome Awareness Month: Spreading Rare Disease Awareness

Rare Community Profiles: Dr. Pisit “Duke” Pitukcheewanont Discusses Phase 2 Results in LUM-201 for Pediatric Growth Hormone Deficiency

Study of the Week: Contaminated Bedding Doubles Risk of C. Diff

Rare Classroom: Metastatic Urothelial Cancer

Rare Community Profiles: How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disease Space

Study of the Week: Omega-3 Fatty Acids Could Slow Pulmonary Fibrosis

RDLA Webinar: Rare Disease Policy Priorities for 2024

Rare Classroom: Autoimmune Hemolytic Anemia

Rare Community Profiles: Peggy Lillis’ Legacy: How the End of an Extraordinary Life Launched a Foundation for C. Diff Education, Awareness, and Policy

Rare Community Profiles: A Conversation with Rallybio CEO Stephen Uden on the Need for Rare Disease Drug Development

Rare Classroom: Idiopathic Hypersomnia

Rare Community Profiles: Fighting for Women’s Fertility: How Amanda Translated Her 3 Cancer Diagnoses into Empowerment

Study of the Week: A Possible Treatment Target for CDKL5 Deficiency Disorder

Rare Classroom: Cervical Cancer

Rare Classroom: Cutaneous T-Cell Lymphoma

Rare Classroom: Paroxysmal Nocturnal Hemoglobinuria

Rare Classroom: Autoimmune Autonomic Ganglionopathy

Rare Community Profiles: The Enemy Inside Me: Brandi’s Journey of Hope and Survivorship After Ewing Sarcoma

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

Rare Community Profiles: Every Day for MBC: What Laura Wants You to Know about Metastatic Breast Cancer

Study of the Week: Lysosomal Acid Lipase Deficiency in Japan

Rare Community Profiles: Creating a Strong Patient Advocacy-Pharma Partnership: How Inozyme Pharma and GACI Global Came Together for Impact

Rare Classroom: Schindler Disease

Rare Community Profiles: Battling Renal Cell Carcinoma and Oligodendroglioma Led Tony to Found a Nonprofit for Families Fighting 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!

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

Let’s Work Together!

Keep Up to Date

Learn More