interview – Page 4 – Patient Worthy

Chronic Illness, COVID-19, and Creative Writing: Discussing “Disposed: A Story of Chronic Illness During the COVID-19 Pandemic” with Dan Pezzetta (Pt. 1)

Post author:Jessica Lynn
Post published:April 11, 2022
Post category:Aortic valve stenosis of the child

At 22 years old, Dan Pezzetta is carving out a name for himself in the chronic illness sphere. When he was born, Dan was diagnosed with aortic stenosis. Although intervention…

source: pixabay.com

ERN-RITA Enables Virtual Health Consultations With European Experts

Post author:James Moore
Post published:March 28, 2022
Post category:Hereditary Angiodema Hereditary angioedema Rare Disease

Note: this story was originally published by HAE Junior, a Patient Worthy partner Interview with Malena Vetterli from the European Reference Network (ERN-RITA) for rare immunodeficiencies, autoinflammatory and autoimmune diseases.…

Aymanjed / Pixabay

Medical Professionals Discuss Guidelines for Psoriatic Arthritis

Post author:Alyssa Stevens
Post published:March 23, 2022
Post category:Psoriatic Arthritis

Recently, two medical professionals were interviewed where they discussed their recommendations for the guidelines pertaining to managing psoriatic arthritis. Psoriatic Arthritis Psoriatic arthritis is a type of inflammatory arthritis that…

Stewart and Lorrie Altman

Interview: Living a Full and Filling Life with Late-Onset Tay-Sachs (LOTS) Pt. 1

Post author:Jessica Lynn
Post published:February 21, 2022
Post category:Tay-Sachs Disease

48 years of marriage, 2 children, 2 nephews, 7 grandchildren, and 3 great-nieces. It is clear that Lorrie and Stewart Altman, over their time together, have created a beautiful life.…

Mallory and Maisy with their family. Photo courtesy of Mallory Cyr

“With Mais and Mal:” Meet Two Sisters Changing the Conversation around MID & Life with a Rare Disease (Pt. 1)

Post author:Jessica Lynn
Post published:January 5, 2022
Post category:Microvillus Inclusion Disease

What does someone with a rare disease look like? With over 7,000 rare diseases in the world, affecting an estimated 300 million people, life with a rare disease (and people…

AllStripes corporate lifestyle photo shoot at Salesforce park and AllStripes offices in San Francisco, Calif., Tuesday, Aug. 17, 2021. Photo by Alison Yin/Alison Yin Photography (Provided to PW by AllStripes)

AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 2)

Post author:Jessica Lynn
Post published:December 14, 2021
Post category:Rare Disease

Nancy Yu co-founded AllStripes with a vision in mind: to unlock more treatment options for those with rare diseases. In Part 1 of our interview, Patient Worthy sat down with…

Sambeetarts / Pixabay

AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 1)

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

For as long as she can remember, Nancy Yu has been entranced by the intersection of science and technology. In fact, as she describes it, she imagines a world in…

“Save Our Medicine:” NPC Families Fight to Save Experimental Medication Access (Pt. 2)

Post author:Jessica Lynn
Post published:December 1, 2021
Post category:Niemann-Pick Disease Niemann-Pick Type C Disease

For Part 2 of "Save Our Medicine," we continue talking with Tiffany, DeAnna, and Sara about their families' NPC journeys, as well as the push for medication access. If you…

Courtesy of Debbie Kaflowitz

Remembering Rachael Kaflowitz: One Mother’s Fight to Support NPC Research and Awareness (Pt. 3)

Post author:Jessica Lynn
Post published:December 1, 2021
Post category:Niemann-Pick Disease Niemann-Pick Type C Disease

To learn more about Rachael's story, Niemann-Pick type C (NPC) symptoms, the diagnostic process, and how her mother Debbie found and offered support to other families, take a look at Parts…

The TSC Navigator: A New Resource to Guide Families through the TSC Journey (Pt. 1)

Post author:Jessica Lynn
Post published:November 29, 2021
Post category:Tuberous Sclerosis Complex

The TSC Alliance® first began as a grassroots organization, founded by motivated mothers whose children had been diagnosed with tuberous sclerosis complex (TSC), a rare genetic disease. Since its founding,…

source: pixabay.com

Alzheimer’s and Dementia: One Size Does Not Fit All

Post author:Rose Duesterwald
Post published:October 18, 2021
Post category:Alzheimer's disease

Author Lauren Wellbank recently interviewed Dr. Sara Candler, Director of the Iora Care Team, for a special edition of Martha Stewart’s Health and Wellness. The interview focused on dementia and…

source: pixabay.com

Interview: DUO-E Trial for Advanced/Recurrent Endometrial Cancer

Post author:Kendall Mason
Post published:September 13, 2021
Post category:Endometrial cancer

Endometrial cancer is the most common form of cancer that develops in the uterus, and there is currently a need for more treatment options, especially when it comes to the…

source: pixabay.com

Interview: Current Treatments and Pevonedistat Plus HMAs for MDS

Post author:Kendall Mason
Post published:July 22, 2021
Post category:Myelodysplastic syndromes

OncLive recently interviewed Daniel Pollyea, MD, MS, about the current treatment landscape for higher-risk myelodysplastic syndromes (HR-MDS), along with exciting new data from a Phase 2 trial of pevonedistat plus…

Sourced from Adam Kemble for the interview.

MS, Mavenclad, and Moving Forward: An Interview with Adam Kemble

Post author:Jessica Lynn
Post published:March 30, 2021
Post category:Multiple Sclerosis

When I sat down with 38-year-old Adam Kemble for our interview, there was one point that he really drove home: “You have the opportunity to choose what you let define…

source: pixabay.com

What Challenges do Rare Disease Patients Face in India?

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

MSN News recently interviewed Dr. Laxmikant Palo, with the conversation focusing on the situations of people living with rare diseases in India and how to improve them. According to Dr.…

source: pixabay.com

Interviewing Your Future Self

Post author:Patient Worthy Contributor
Post published:May 1, 2020
Post category:Cystinosis

Because I will be looking for a job from a rare but certainly not unique place of being, I decided to reach out to a mentor who lives with the…

source: pixabay.com

How to Find Meaning and Purpose Even When You’re Suffering: Q&A with Tom Seaman, Health Coach

Post author:Tom Seaman
Post published:February 18, 2020
Post category:Dystonia

I recently had the pleasure of being interviewed by Sunshine Mugrabi about how I transformed my life over the past 20 years in the face of immense pain and suffering…

Against the Odds: Maria’s Journey with – and beating – Rare Epithelioid Sarcoma

Post author:Jean Martell
Post published:March 11, 2019
Post category:Epithelioid sarcoma Rare Disease

Wisconsin; the land of beer, cheese, good-hearted people, and Maria Voermans - rare cancer survivor and now fierce advocate for the rare disease community. Ten years ago, Maria had the…

Lisa Deck’s Journey Part 2

Post author:Rebekah
Post published:January 22, 2019
Post category:Moyamoya Disease Rare Disease

Read the first part of Lisa's story here. Lisa’s two direct and indirect bypass surgeries were successful. She now had seven times more blood flow to her brain than she…

Lisa Deck’s Journey Part 1

Post author:Rebekah
Post published:January 17, 2019
Post category:Moyamoya Disease Rare Disease

At age twenty one, Lisa was about to graduate college and had a promising future career in front of her. All that was left was graduation itself. The week before…

Lyme is contracted by ticks, which means nature and hiking-lovers are at a higher risk.

An Honest Interview on Living with Cystinosis, Kidney Transplants, and Cancer

Post author:Rebekah Palmer
Post published:October 3, 2018
Post category:Rare Disease

Many persons living with rare disease require a transplant of certain organs. Though this is not a cure for the rare disease Cystinosis, a kidney transplant is often required once the disease…

Source: Pixabay

Shooting for the Moon: Sisterhood and Strength in the Face of HCC

Post author:Rebekah
Post published:July 30, 2018
Post category:Hepatocellular Carcinoma Rare Disease

Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate. In her early twenties, Andrea became the legal guardian…

https://pixabay.com/en/plane-aircraft-airplane-transport-409047/

An Interview with the Unstoppable Helena Baker Part 2

Post author:Rebekah
Post published:July 16, 2018
Post category:Fibular Hemimelia Rare Disease

This is a continuation of An Interview with the Unstoppable Helena Baker. We had just learned about the multiple decades it took for her to receive her diagnosis of Fibula…

[Source: pixabay.com]

An Interview with the Unstoppable Helena Baker, Part 1

Post author:Rebekah
Post published:July 9, 2018
Post category:Rare Disease

Helena Baker is the Vice President of Clinical Strategy at Medical Research Network, a Nurse, and also, a rare disease patient. I had the opportunity to interview her for a…

ColiN00B / Pixabay

The Ups, Downs, and Reality of Genetic Testing: an Interview with Carl Zimmer

Post author:Samuel Sachs
Post published:June 15, 2018
Post category:Muscular Dystrophy Sickle cell anemia

Many people are familiar with Carl Zimmer as a science columnist from The New York Times. His columns and research dug deeply into the field of genetic research and gene…

Chronic Illness, COVID-19, and Creative Writing: Discussing “Disposed: A Story of Chronic Illness During the COVID-19 Pandemic” with Dan Pezzetta (Pt. 1)

ERN-RITA Enables Virtual Health Consultations With European Experts

Medical Professionals Discuss Guidelines for Psoriatic Arthritis

Interview: Living a Full and Filling Life with Late-Onset Tay-Sachs (LOTS) Pt. 1

“With Mais and Mal:” Meet Two Sisters Changing the Conversation around MID & Life with a Rare Disease (Pt. 1)

AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 2)

AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 1)

“Save Our Medicine:” NPC Families Fight to Save Experimental Medication Access (Pt. 2)

Remembering Rachael Kaflowitz: One Mother’s Fight to Support NPC Research and Awareness (Pt. 3)

The TSC Navigator: A New Resource to Guide Families through the TSC Journey (Pt. 1)

Alzheimer’s and Dementia: One Size Does Not Fit All

Interview: DUO-E Trial for Advanced/Recurrent Endometrial Cancer

Interview: Current Treatments and Pevonedistat Plus HMAs for MDS

MS, Mavenclad, and Moving Forward: An Interview with Adam Kemble

What Challenges do Rare Disease Patients Face in India?

Interviewing Your Future Self

How to Find Meaning and Purpose Even When You’re Suffering: Q&A with Tom Seaman, Health Coach

Against the Odds: Maria’s Journey with – and beating – Rare Epithelioid Sarcoma

Lisa Deck’s Journey Part 2

Lisa Deck’s Journey Part 1

An Honest Interview on Living with Cystinosis, Kidney Transplants, and Cancer

Shooting for the Moon: Sisterhood and Strength in the Face of HCC

An Interview with the Unstoppable Helena Baker Part 2

An Interview with the Unstoppable Helena Baker, Part 1

The Ups, Downs, and Reality of Genetic Testing: an Interview with Carl Zimmer

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

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