November 7, 2022 – Patient Worthy

Photo courtesy of Geraldine Bliss

Raising Phelan-McDermid Syndrome Awareness (And How YOU Can Get Involved at the EL-PFDD Meeting!): An Interview with Geraldine Bliss (Pt. 2)

Post author:Jessica Lynn
Post published:November 7, 2022
Post category:Phelan-McDermid syndrome

Before you read on, make sure to check out Part 1 of our interview with Geraldine Bliss, the President and Co-Founder of CureSHANK and mother to Charles, who has Phelan-McDermid syndrome. Today,…

Photo courtesy of Lacy Biram

Becoming an Advocate for Phelan-McDermid Syndrome (PMS): Lacy and Avenly’s Story

Post author:Jessica Lynn
Post published:November 7, 2022
Post category:Phelan-McDermid syndrome

Prior to her daughter Avenly’s diagnosis, Lacy Biram had never before heard of Phelan-McDermid syndrome (PMS). Currently, there are an estimated 2,200-3,000 people worldwide who have this rare condition. For…

source: shutterstock.com

November 10th is Genetic Counselor Awareness Day

Post author:James Moore
Post published:November 7, 2022
Post category:Rare Disease

Genetic Counselor Awareness Day is recognized on the second Thursday of November each year. In 2022, the day falls on the 10th of November. This awareness day is intended…

AVM arteriovenous malformation

Developing A Worldwide Community for People With Rare Diseases

Post author:Rose Duesterwald
Post published:November 7, 2022
Post category:Arteriovenous malformation

In 2006 twenty-nine-year-old Austinite Ben Munoz of Dallas, Texas experienced such a severe headache and dizziness that he drove to the hospital and underwent surgery several hours later. Ben was…

source: pixabay.com

Study of the Week: Liquid Biopsy Could Help Direct Rhabdomyosarcoma Treatment

Post author:James Moore
Post published:November 7, 2022
Post category:Rhabdomyosarcoma- embryonal

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…

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Raising Phelan-McDermid Syndrome Awareness (And How YOU Can Get Involved at the EL-PFDD Meeting!): An Interview with Geraldine Bliss (Pt. 2)

Becoming an Advocate for Phelan-McDermid Syndrome (PMS): Lacy and Avenly’s Story

November 10th is Genetic Counselor Awareness Day

Developing A Worldwide Community for People With Rare Diseases

Study of the Week: Liquid Biopsy Could Help Direct Rhabdomyosarcoma Treatment

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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