interview – Patient Worthy

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WHAT THE C@H?!: How This Educational Initiative Supports the Congenital Adrenal Hyperplasia (CAH) Community

Post author:Jessica Lynn
Post published:October 17, 2024
Post category:Congenital Adrenal Hyperplasia

For over three decades, Neurocrine Biosciences, Inc. has been working to support individuals with neurological, neuroendocrine and neuropsychiatric disorders through the development of breakthrough treatment options. One of the company’s…

Fotocitizen / Pixabay

Rare Community Profiles: Superhero Liam Battles KAND with the Help of Shriners Children’s

Post author:Jessica Lynn
Post published:July 16, 2024
Post category:KIF1A Mutation

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: Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health

Post author:Jessica Lynn
Post published:July 9, 2024
Post category:Anal 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.…

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Rare Community Profiles: Stiff Person Syndrome (SPS) Advocates Respond to Celine Dion’s Claims in “I Am: Celine Dion”

Post author:Jessica Lynn
Post published:July 1, 2024
Post category:Stiff Person Syndrome Stiff-Person 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: White Paper Discusses Access Barriers in IgG4-Related Disease (IgG4-RD)

Post author:Jessica Lynn
Post published:June 18, 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.…

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STXBP1 Disorders Foundation President Charlene Son Rigby on the First White House Rare Disease Forum

Post author:James Moore
Post published:May 15, 2024
Post category:STXBP1 disorders

On February 28th, 2024, the first-ever White House Rare Disease Forum took place. Hosted by the White House Office of Science and Technology Policy, this forum provided a platform for…

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,…

Fotocitizen / Pixabay

Rare Community Profiles: Inozyme’s Catherine Nester Discusses Newborn Screening and the GACI Diagnostic Delay

Post author:Jessica Lynn
Post published:September 27, 2023
Post category:Generalized arterial calcification of infancy-1 (GACI1)

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…

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Rare Community Profiles: How Stephanie’s Desmoid Tumor Journey Inspired Her Fight Against Medical Gaslighting

Post author:Jessica Lynn
Post published:April 20, 2023
Post category:Desmoid tumor

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…

Photo courtesy of Sarita Edwards

Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards

Post author:Jessica Lynn
Post published:March 29, 2023
Post category:Rare Disease Trisomy 18

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…

photo: Richard Poulin

After His Daughter was Treated for AADC Deficiency, This Father is Educating the Rare Community

Post author:James Moore
Post published:February 28, 2023
Post category:AADC Deficiency

When Richard Poulin's daughter Rylae-Ann was born, it wasn't long before he and his wife began to wonder if something was wrong. They both felt confident in understanding the…

Photo courtesy of Laura Kaup

Laura’s Story: Sharing Her Experience with Carpenter Syndrome (Pt. 1)

Post author:Jessica Lynn
Post published:February 21, 2023
Post category:Carpenter syndrome Craniosynostosis

For many people with a rare condition, sharing their story can be personally fulfilling—and it can help others realize that they are not alone. More so, shared stories can encourage…

Photo courtesy of Lacey Smith

“A Rare Gem”: Savannah’s Story Spreads Ogden Syndrome Awareness (Pt. 1)

Post author:Jessica Lynn
Post published:February 21, 2023
Post category:Cerebral Palsy Eosinophilic Esophagitis Lennox-Gastaut syndrome Ogden Syndrome

Right now, there are approximately 100 people in the world who have been diagnosed with Ogden syndrome, a rare neurodevelopmental disorder. Lacey Smith’s 11-year-old daughter Savannah is part of this…

Photo courtesy of Arica Svoboda

SLC25A26: Arica’s Children are 2 of Only 7 People Worldwide with This Rare Condition

Post author:Jessica Lynn
Post published:February 7, 2023
Post category:Rare Disease SLC25A26

When Arica Svoboda thinks of her two children, Hayes and Hendrix, she can’t help but fill up with love. She tells Patient Worthy: “My boys are special. Their smiles and…

Photo courtesy of Angel Jenkins

“There is Hope:” How Angel Thrives with her HoFH Diagnosis

Post author:Jessica Lynn
Post published:February 7, 2023
Post category:Familial Hypercholesterolemia

For many people, a rare disease diagnosis can feel like life is over. For Angel, growing up with homozygous familial hypercholesterolemia (HoFH), a rare genetic condition characterized by extremely high…

Photo courtesy of Jodi Burckner

Emma’s Story: Living Life with Galloway-Mowat Syndrome (GAMOS)

Post author:Jessica Lynn
Post published:February 3, 2023
Post category:Galloway-Mowat syndrome

What would you do if you were told that your child had a rare disease? How about if your child had an ultra-rare disease, which affects fewer than 20 in…

Photo courtesy of Emily Katharine

Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 2)

Post author:Jessica Lynn
Post published:February 2, 2023
Post category:Stickler Syndrome

Before you read on, make sure to check out Part 1 of Emily's story. In Part 1, Emily discusses what Stickler syndrome is and her diagnostic journey. Today, we'll discuss coming to…

Photo courtesy of Emily Katharine

Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 1)

Post author:Jessica Lynn
Post published:February 1, 2023
Post category:Stickler Syndrome

Living with a rare genetic disease like Stickler syndrome (Or “Sticklers”) isn’t a death sentence. If Emily Katharine wants people to know one thing, that’s it: that they are more…

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Informing Treatment Decisions for Psoriatic Arthritis: A Discussion with Dr. Soumya Chakravarty

Post author:Jessica Lynn
Post published:January 25, 2023
Post category:Psoriatic Arthritis

From November 10-14, 2022, various stakeholders within the rheumatology sphere connected at the American College of Rheumatology’s (ACR) Convergence 2022. During ACR Convergence, described as the world’s premier rheumatology experience,…

Photo courtesy of Jennifer

Marathons, Mindfulness, and Multiple Sclerosis: How Jennifer Found Balance (and Challenge!) through her Diagnosis (Pt. 2)

Post author:Jessica Lynn
Post published:January 24, 2023
Post category:Multiple Sclerosis

Before you read on, make sure to check out Part 1 of Jennifer's story. In Part 1, we discuss what multiple sclerosis is, its symptoms, treatment options, and Jennifer's journey from diagnosis…

Photo courtesy of Jennifer

Marathons, Mindfulness, and Multiple Sclerosis: How Jennifer Found Balance (and Challenge!) through her Diagnosis (Pt. 1)

Post author:Jessica Lynn
Post published:January 23, 2023
Post category:Multiple Sclerosis

If there is one lesson that Jennifer embodies in full, it’s this: always live life to your fullest. That’s what Jennifer aims to do every day. As an education consultant,…

Photo courtesy of Dr. Antoine Yver

Interview: Dr. Yver Discusses ASH, SerpinPC, and the Need for Novel Hemophilia Treatments

Post author:Jessica Lynn
Post published:January 23, 2023
Post category:Hemophilia Hemophilia B Timely

The American Hematology Society (ASH) held its 64th Annual Meeting in December 2022. During the Meeting, a variety of stakeholders—including physicians, researchers, and industry members—gathered to discuss research, trends, and…

Photo Courtesy of Dr. Jesse W. Hall

AltruBio’s Dr. Jesse Hall Discusses Data on ALTB-168 for Acute GvHD

Post author:Jessica Lynn
Post published:January 19, 2023
Post category:Graft versus Host Disease Graft-versus-Host Disease

The American Society of Hematology (ASH) held its 64th Annual Meeting from December 10-13, 2022. During the meeting, doctors, researchers, and other stakeholders within the hematology sphere came together to…

Courtesy of Dr. Rajeev Raghavan

Dr. Rajeev Raghavan Discusses Data on Lupus and COVID-19 (Pt. 2)

Post author:Jessica Lynn
Post published:January 18, 2023
Post category:COVID-19 Lupus

Before you read on, don't forget to check out Part 1 of our interview. In Part 1, Dr. Raghavan discussed his background, explained what lupus is, and introduced some of the findings…

Courtesy of Dr. Rajeev Raghavan

Dr. Rajeev Raghavan Discusses Data on Lupus and COVID-19 (Pt. 1)

Post author:Jessica Lynn
Post published:January 17, 2023
Post category:COVID-19 Lupus

It’s no secret that the COVID-19 pandemic significantly changed the way we interact with the world around us: in our social lives, the way we work, the way we communicate,…

WHAT THE C@H?!: How This Educational Initiative Supports the Congenital Adrenal Hyperplasia (CAH) Community

Rare Community Profiles: Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health

Rare Community Profiles: Stiff Person Syndrome (SPS) Advocates Respond to Celine Dion’s Claims in “I Am: Celine Dion”

STXBP1 Disorders Foundation President Charlene Son Rigby on the First White House Rare Disease Forum

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

Rare Community Profiles: Inozyme’s Catherine Nester Discusses Newborn Screening and the GACI Diagnostic Delay

Rare Community Profiles: How Stephanie’s Desmoid Tumor Journey Inspired Her Fight Against Medical Gaslighting

Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards

After His Daughter was Treated for AADC Deficiency, This Father is Educating the Rare Community

Laura’s Story: Sharing Her Experience with Carpenter Syndrome (Pt. 1)

“A Rare Gem”: Savannah’s Story Spreads Ogden Syndrome Awareness (Pt. 1)

SLC25A26: Arica’s Children are 2 of Only 7 People Worldwide with This Rare Condition

“There is Hope:” How Angel Thrives with her HoFH Diagnosis

Emma’s Story: Living Life with Galloway-Mowat Syndrome (GAMOS)

Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 2)

Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 1)

Informing Treatment Decisions for Psoriatic Arthritis: A Discussion with Dr. Soumya Chakravarty

Marathons, Mindfulness, and Multiple Sclerosis: How Jennifer Found Balance (and Challenge!) through her Diagnosis (Pt. 2)

Marathons, Mindfulness, and Multiple Sclerosis: How Jennifer Found Balance (and Challenge!) through her Diagnosis (Pt. 1)

Interview: Dr. Yver Discusses ASH, SerpinPC, and the Need for Novel Hemophilia Treatments

AltruBio’s Dr. Jesse Hall Discusses Data on ALTB-168 for Acute GvHD

Dr. Rajeev Raghavan Discusses Data on Lupus and COVID-19 (Pt. 2)

Dr. Rajeev Raghavan Discusses Data on Lupus and COVID-19 (Pt. 1)

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