Trisomy 18 – Patient Worthy

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…

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Rare Classroom: Trisomy 18

Post author:James Moore
Post published:June 3, 2022
Post category:Edwards Syndrome Trisomy 18

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…

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Middle Schoolers Build Mobility Car for Girl with Trisomy 18

Post author:Jessica Lynn
Post published:June 1, 2022
Post category:Trisomy 18

Rachel Harrison remembers what the doctors told her when her daughter Hope was born – that she wasn’t going to make it. You see, Hope was born with a rare…

https://pixabay.com/en/money-coins-donate-moneybox-cash-230265/

Family That Lost Newborn to Trisomy 18 Hosting Fundraiser to Give Back to Hospice Center that Supported Them

Post author:Scott Carlson
Post published:July 3, 2019
Post category:Edwards Syndrome Trisomy 18

According to a publication from the Basingstoke Gazette, a Basingstoke family is raising money for the children's hospice center that supported them through the loss of a child. Jessica and…

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Rare Diseases and Abortion Bans: What is the Impact?

Post author:James Moore
Post published:June 11, 2019
Post category:Anencephaly Potter syndrome dominant type Rare Disease Trisomy 18

With the advent of a majority conservative Supreme Court with the appointment of Brett Kavanaugh last year, several US states have recently passed laws that effectively ban abortions. Many of…

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Edwards Syndrome Gave Their Daughter Only Weeks to Live, But This Couple is Trying To Make the Most of It

Post author:James Moore
Post published:March 9, 2018
Post category:Edwards Syndrome Trisomy 18

According to a story from the Daily Post, Katie Roy and Tjay Narciso were horrified when doctors told them that their new born daughter Kaila will only survive for a…

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

Rare Classroom: Trisomy 18

Middle Schoolers Build Mobility Car for Girl with Trisomy 18

Family That Lost Newborn to Trisomy 18 Hosting Fundraiser to Give Back to Hospice Center that Supported Them

Rare Diseases and Abortion Bans: What is the Impact?

Edwards Syndrome Gave Their Daughter Only Weeks to Live, But This Couple is Trying To Make the Most of It

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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