September 17, 2020September 16, 2020
Interview With the Butterfly, Part 1
Columns, Fragile but Fierce – a Column by Patrice Williams
First in a series. My son Jonah was born with junctional epidermolysis bullosa in 2009. He is now 11 and ... Read more
September 9, 2020September 9, 2020
Donor-derived Skin Grafts Feasible Way of Treating RDEB, Trial Reports
News
Transplanting skin grafts from healthy donors can be a safe and effective way of treating chronic wounds in people ... Read more
September 3, 2020September 15, 2020
Focusing on the Manna for Today
Columns, Fragile but Fierce – a Column by Patrice Williams
Our son Jonah is 11 years old now and just began the sixth grade. It blows my mind to ... Read more
September 3, 2020September 3, 2020
Same But Different Photo Contest Celebrates People With Rare Diseases
News, syndicated
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography ... Read more
September 2, 2020September 2, 2020
Efficacy of Cream in Control Group May Explain ESSENCE Trial Failure, Study Reports
News
An analysis of the control group from the ESSENCE Phase 3 clinical trial, which tested the topical cream SD-101 in ... Read more
September 1, 2020August 27, 2020
Rethink, Accept, and Appreciate Your Unique Self
Columns, Girl with the Butterfly Tattoo – a Column by Lena Riedl
I am finally back at BioNews and writing as “The Girl with the Butterfly Tattoo.” I can’t tell you ... Read more
August 26, 2020August 26, 2020
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
News, syndicated
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search ... Read more
August 20, 2020August 19, 2020
If You Are Struggling, Find Your Army
Columns, Fragile but Fierce – a Column by Patrice Williams
When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, ... Read more
August 19, 2020August 19, 2020
Most EB Patients Want to Participate in Clinical Trials but Have Concerns, Survey Finds
News
Most people with epidermolysis bullosa (EB) want to participate in clinical research for potential new therapies, but find travel ... Read more
August 18, 2020August 18, 2020
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
News, syndicated
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare ... Read more
August 13, 2020August 13, 2020
New Streaming Channel Showcases Rare Disease Films
News, syndicated
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers ... Read more
August 12, 2020August 12, 2020
Scientists Identify 2 New COL7A1 Gene Mutations in Chinese Girl With RDEB
News
Scientists have identified two new variants in the COL7A1 gene associated with recessive dystrophic epidermolysis bullosa (RDEB) in a ... Read more

First in a series. My son Jonah was born with junctional epidermolysis bullosa in 2009. He is now 11 and in the sixth grade. I am honored to write this ... Read more

September 9, 2020September 9, 2020

Donor-derived Skin Grafts Feasible Way of Treating RDEB, Trial Reports

News

Transplanting skin grafts from healthy donors can be a safe and effective way of treating chronic wounds in people with recessive dystrophic epidermolysis bullosa, a small clinical trial shows. ... Read more

September 3, 2020September 15, 2020

Focusing on the Manna for Today

Columns, Fragile but Fierce – a Column by Patrice Williams

Our son Jonah is 11 years old now and just began the sixth grade. It blows my mind to think that it has been 11 years since our journey ... Read more

September 3, 2020September 3, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

September 2, 2020September 2, 2020

Efficacy of Cream in Control Group May Explain ESSENCE Trial Failure, Study Reports

News

An analysis of the control group from the ESSENCE Phase 3 clinical trial, which tested the topical cream SD-101 in people with epidermolysis bullosa (EB), found overall improvements in wound closure and ... Read more

September 1, 2020August 27, 2020

Rethink, Accept, and Appreciate Your Unique Self

Columns, Girl with the Butterfly Tattoo – a Column by Lena Riedl

I am finally back at BioNews and writing as “The Girl with the Butterfly Tattoo.” I can’t tell you how much I’ve missed writing. Due to the coronavirus and ... Read more

August 26, 2020August 26, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 20, 2020August 19, 2020

If You Are Struggling, Find Your Army

Columns, Fragile but Fierce – a Column by Patrice Williams

When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, my husband, Matt, and I each carried mutated genes that, ... Read more

August 19, 2020August 19, 2020

Most EB Patients Want to Participate in Clinical Trials but Have Concerns, Survey Finds

News

Most people with epidermolysis bullosa (EB) want to participate in clinical research for potential new therapies, but find travel distances to trial sites and the risk of treatment side ... Read more

August 18, 2020August 18, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

Interview With the Butterfly, Part 1