Rare Community Profiles – Page 2

Photo by Robina Weermeijer on Unsplash

Rare Community Profiles: A Potential Treatment Turning Point for ALK-Positive NSCLC: Dr. Ken Culver Shares Insights from the Phase 3 ALINA Study on Alecensa

Post author:Jessica Lynn
Post published:March 27, 2024
Post category:Lung Cancer 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

Rare Community Profiles: How Patient Advocate Kecia J. Survived and Thrived Through Her Rare Colorectal Cancer Battle

Post author:Jessica Lynn
Post published:March 20, 2024
Post category:Colorectal cancer Timely

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: In Pursuit of Progress: From HSP Diagnosis to Rare Disease Research

Post author:Jessica Lynn
Post published:March 20, 2024
Post category:Hereditary Spastic Paraparesis

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 Hidden Agony: Why James is Shedding Light on Geniculate Neuralgia and its Impact on Daily Life

Post author:Jessica Lynn
Post published:March 12, 2024
Post category: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

Rare Community Profiles: Breaking Barriers: How Nicole and Emma Offer Hope Amidst a Dravet Syndrome Diagnosis

Post author:Jessica Lynn
Post published:February 21, 2024
Post category:Dravet Syndrome

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: Unraveling the Genetic Threads: Erin’s Quest to Test for ALSP

Post author:Jessica Lynn
Post published:February 14, 2024
Post category:Adult-onset leukoencephalopathy

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: 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.…

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.…

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.…

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.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: 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.…

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.…

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.…

source: Nadia Bilous

Rare Community Profiles: The Importance of Community While Raising a Child with GRIN2B Disorder

Post author:Patient Worthy Contributor
Post published:November 14, 2023
Post category:GRIN disorder

Rare Community Profiles 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,…

Photo courtesy of Elijah Stacey

Rare Community Profiles: Destroy Duchenne: How Elijah Stacy is Working to Improve the Lives of People with Duchenne Muscular Dystrophy

Post author:Jessica Lynn
Post published:November 9, 2023
Post category:Duchenne Muscular Dystrophy

Rare Community Profiles 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,…

Photo courtesy of the Melanoma Research Alliance

Rare Community Profiles: Melanoma Research Alliance’s Marc Hurlbert Shares Milestone Achievement of RARE Registry for Acral and Mucosal Melanoma

Post author:Jessica Lynn
Post published:October 17, 2023
Post category:Melanoma

Rare Community Profiles 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,…

Fotocitizen / Pixabay

Rare Community Profiles: Dr. Brian Koffman Discusses the Complexities of Immunization for People with CLL/SLL

Post author:Jessica Lynn
Post published:October 10, 2023
Post category:Chronic Lymphocytic Leukemia Chronic Lympocytic Leukemia small lymphocytic lymphoma

Rare Community Profiles 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,…

Source: Pixabay

Rare Community Profiles: Living with Gratitude: How Kate Remained Positive Through Her Two Battles with Glioblastoma

Post author:Jessica Lynn
Post published:October 3, 2023
Post category:Glioblastoma

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

Fotocitizen / Pixabay

Rare Community Profiles: Strong Like a Mother: How Judy Has Remained Steadfast Through Her IgAN Journey

Post author:Jessica Lynn
Post published:September 21, 2023
Post category:IgA Nephropathy IgA Nephropathy (IgAN)

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

Fotocitizen / Pixabay

Rare Community Profiles: From Afraid to Advocate: How Natalie Found Her Power After a Friedreich’s Ataxia Diagnosis

Post author:Jessica Lynn
Post published:September 14, 2023
Post category:Friedreich ataxia Friedreich's Ataxia Friedreich's ataxia

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

source: pixabay.com

Rare Community Profiles: Understanding MAC Lung Disease, Bronchiectasis, and PAH: A Discussion with Dr. Martina Flammer

Post author:Jessica Lynn
Post published:September 13, 2023
Post category:Bronchiectasis Mycobacterium avium complex infection Mycobacterium avium infection pulmonary arterial hypertension

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

Rare Community Profiles: A Potential Treatment Turning Point for ALK-Positive NSCLC: Dr. Ken Culver Shares Insights from the Phase 3 ALINA Study on Alecensa

Rare Community Profiles: How Patient Advocate Kecia J. Survived and Thrived Through Her Rare Colorectal Cancer Battle

Rare Community Profiles: In Pursuit of Progress: From HSP Diagnosis to Rare Disease Research

Rare Community Profiles: A Hidden Agony: Why James is Shedding Light on Geniculate Neuralgia and its Impact on Daily Life

Rare Community Profiles: Breaking Barriers: How Nicole and Emma Offer Hope Amidst a Dravet Syndrome Diagnosis

Rare Community Profiles: Unraveling the Genetic Threads: Erin’s Quest to Test for ALSP

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

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

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

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

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

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

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

Rare Community Profiles: The Importance of Community While Raising a Child with GRIN2B Disorder

Rare Community Profiles: Destroy Duchenne: How Elijah Stacy is Working to Improve the Lives of People with Duchenne Muscular Dystrophy

Rare Community Profiles: Melanoma Research Alliance’s Marc Hurlbert Shares Milestone Achievement of RARE Registry for Acral and Mucosal Melanoma

Rare Community Profiles: Dr. Brian Koffman Discusses the Complexities of Immunization for People with CLL/SLL

Rare Community Profiles: Living with Gratitude: How Kate Remained Positive Through Her Two Battles with Glioblastoma

Rare Community Profiles: Strong Like a Mother: How Judy Has Remained Steadfast Through Her IgAN Journey

Rare Community Profiles: From Afraid to Advocate: How Natalie Found Her Power After a Friedreich’s Ataxia Diagnosis

Rare Community Profiles: Understanding MAC Lung Disease, Bronchiectasis, and PAH: A Discussion with Dr. Martina Flammer

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

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

Let’s Work Together!

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