Here you will find news articles and press releases that relate to Epidermolysis Bullosa (EB).



Amryt Granted Orphan Drug Designation by the FDA for AP103
December 23, 2020

EB May Be More Common Than Thought in Netherlands, Dutch Study Finds
December 16, 2020

Rob Rayl named Chief Development Officer and Chief Operating Officer of debra of America
November 17, 2020

Amryt Announces Positive Results From Phase 3 Trial of FILSUVEZ® in Epidermolysis Bullosa
October 29, 2020

A Maryland toddler with a rare skin disorder regularly faces ‘traumatic stress.’ But she has devoted advocates: her parents.
October 29, 2020

BridgeBio Pharma and Affiliate Phoenix Tissue Repair Announce First Patient Dosing In Phase 2 Trial of Protein Replacement Therapy for the Treatment of Recessive Dystrophic Epidermolysis Bullosa (RDEB)
October 27, 2020

Amryt Plans Regulatory Submissions for Filsuvez Following Positive Phase 3 Data
September 23, 2020

Interview with the Butterfly, Part 1
September 17, 2020

Amryt Announces Positive Top Line Results from Pivotal Phase 3 “EASE” Trial of FILSUVEZ® in Epidermolysis Bullosa
September 9, 2020

The Incredible Teen with Butterfly Skin | BORN DIFFERENT 
August 5, 2020

Krystal Biotech Announces Initiation of Pivotal Phase 3 Study of Beremagene Geperpavec in Patients with Dystrophic Epidermolysis Bullosa
July 28, 2020

Abeona Therapeutics Reinitiates Enrollment in EB-101 Pivotal Phase 3 VIITAL™ Study in RDEB after COVID-19 Related Pause and Announces Progress in Patient Enrollment in MPS III Studies
July 8, 2020

The 20-year-old with Butterfly Skin | BORN DIFFERENT
July 6, 2020

WT Clarke student battling skin disorder inspires behind the mic, on YouTube channel
June 19, 2020

The Worst Disease You've Never Heard Of: Caring for Children with Epidermolysis Bullosa
June 11, 2020

BridgeBio Pharma's Phoenix Tissue Repair Provides Updates to its Recessive Dystrophic Epidermolysis Bullosa (RDEB) Program and Announces New Leadership Appointments
May 13, 2020

9 Philly Companies on the Cutting Edge of Cell and Gene Therapy Innovation
May 9, 2020

Filsuvez Confirmed as Global Brand Name for Ap101
May 7, 2020

Phase 3 Trial of Gene Therapy B-VEC for DEB Expected to Start by June
May 6, 2020

InMed Receives CTA Approval for Second Phase 1 Clinical Trial with INM-755
April 30, 2020

Cannabinoid Cream PPP004 Receives FDA Orphan Drug Designation to Treat EB
April 29, 2020

Dash For A Cure
March 31, 2020

I'm Learning to Be Proud of My Body
March 17, 2020

Abeona Therapeutics Announces First Patient Treated in Pivotal Phase III Clinical Trial Evaluating EB-101 Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa
March 17, 2020

Man Riding Bike Across America to Honor Deceased Son
March 9, 2020

NextUp: The Company Using Gene Therapy to Cure Rare Skin Conditions 
February 24, 2020

FANTAGIRL, I am the woman I am
February 19, 2020

Stem Cell Therapy Considered Safe and Eases Symptoms in Adults With RDEB, Phase 1/2 Trial Shows
February 19, 2020

Man cycles through Marion on cross-country trek in memory of son
February 1, 2020

Abeona Therapeutics Initiates Pivotal Phase 3 Clinical Trial Evaluating EB-101 Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa
January 14, 2020

Aegle Therapeutics Announces $4M Financing to Fund Groundbreaking Stem Cell Exosome Clinical Trial to Treat Orphan Disease Dystrophic Epidermolysis Bullosa
January 7, 2020

The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers
January 3, 2020

Reframing Care of Children with EB Through the Lens of Medical Trauma
January 2020


Bicyclist whose 13-month-old son died channels anger into informing people about rare disease
December 23, 2019

Robbie Twible makes his basketball debut
December 19, 2019

Charlie Knuth, teen fighting rare skin disorder, now facing battle against cancer
December 16, 2019

Abeona Therapeutics Cleared to Initiate Pivotal Phase 3 Clinical Trial Evaluating EB-101 Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa
December 9, 2019

InMed Received Clinical Trial Application Approval for INM-755, a Rare Cannabinoid Formulation Under Development for the Treatment of Epidermolysis Bullosa
December 9, 2019

FDA grants Orphan Drug Designation to Epidermolysis Bullosa treatment
December 9, 2019

Man on mission to help cure rare skin disease bikes through Danville
November 20, 2019

Renowned Researcher Visits U.S. for a Year, Stays A Lifetime
November 14, 2019

Someone You Should Know: Young man relies on strength, humor to live with ‘Butterfly Disease’
November 5, 2019

Krystal Biotech Announces Final Update from Phase 1/2 Clinical Trial of KB103 (“bercolagene telserpavec,” “B-VEC”)
October 29, 2019

Living with Epidermolysis Bullosa
October 24, 2019

5 Things I Wish You Knew About my Daughter’s Epidermolysis Bullosa
October 23, 2019

‘One Night Only Again’ Delivers Unique Jams For A Good Cause At The Cap
October 23, 2019

Rob Freed’s Big Ride For EB
October 16, 2019

Man bikes across US to raise awareness about EB following son’s death
October 3, 2019

Amryt Pharma gets FDA fast-track development status for rare disease treatment
October 1, 2019

Abeona Therapeutics Provides Regulatory Update Ahead of Pivotal Phase 3 Clinical Trial for EB-101 in Recessive Dystrophic Epidermolysis Bullosa
September 23, 2019

Soccer Community Rallies Around Northview’s Archer Brazeau
September 2019

New Gene Editing Technique Shown to Correct COL7A1 Gene in RDEB Cells
September 20, 2019

Boy with skin-peeling condition sent 18,000 cards
September 20, 2019

Pediatric Dermatologist Who Co-Founded Camp for Children Recognized for Care
September 18, 2019

NY man travels through Pueblo; cycling the nation to raise disease awareness
September 13, 2019

Castle Creek Pharmaceutical Holdings to Acquire Fibrocell
September 12, 2019

NASCAR community helps local teen with rare disease celebrate birthday
September 6, 2019

Cyclist’s cross-country efforts benefit rare disease research
August 15, 2019

Pedaling past grief and on to hope
August 10, 2019

Aegle Wins Debra’s Partners in Progress Award, Plans to Soon Open Clinical Trial in DEB Patients
August 9, 2019

Lenus Therapeutics Announces the Result of Complete Wound Healing on the Index Lesion of the First Subject in an Ongoing Single-Masked Phase 2 Trial with RGN-137 Dermal Gel for Epidermolysis Bullosa
August 5, 2019

Volunteers help build fence for Centralia boy with rare skin disease
July 14, 2019

Epidermolysis Bullosa: FDA Seeks to Help Development of New Treatments
July 8, 2019

The Worst Fear I Experienced as a College Student With a Rare Condition
July 1, 2019

Fibrocell’s Gene Therapy To Treat Epidermolysis Bullosa
June 30, 2019

Buoyed by Positive Gene Therapy Results in DEB, Krystal Raises $100 Million
June 25, 2019

Krystal Biotech Announces Positive Results from Phase 2 Clinical Trial (“GEM-2 study”) of KB103 and Receives Regenerative Medicine Advanced Therapy (“RMAT”) Designation from FDA for KB103
June 24, 2019

Social responsibility in dermatology: L’Oréal announces 5 top projects
June 20, 2019

EB-101, Potential Cell Therapy for RDEB, Seen to Lead to Sustained Wound Healing in Trial
June 14, 2019

18-Year-Old With ‘Butterfly Skin’ Wants People to See Past His Excruciating Skin Disorder
June 12, 2019

Skin Deep | Lucy Beal Lott | TEDxUniversityofStAndrews
June 5, 2019

Bicyclist rides cross country and back to raise awareness for skin disease
June 4, 2019

First Patient Dosed in Phase 2 Trial Testing RGN-137 for Epidermolysis Bullosa
May 31, 2019

The Big Ride for EB passes through Carbondale
May 25, 2019

Fibrocell Receives FDA Regenerative Medicine Advanced Therapy Designation for FCX-007 Gene Therapy for the Treatment of RDEB
May 29, 2019

Man biking across the country to raise awareness for skin disease makes stop in Louisville
May 18, 2019

‘So hard to see him in pain:’ Rare skin disorder makes Chapel Hill 4-year-old’s skin as fragile as a butterfly’s wings
May 8, 2019

Phoenix Tissue Repair Receives FDA Fast Track Designation for PTR-01 for the Treatment of Dystrophic Epidermolysis Bullosa (DEB) and Provides Updates on the Phase ½ Clinical Study
April 30, 2019

Kaley Cuoco Honors Friend With Epidermolysis Bullosa In ‘Big Bang Theory’ Episode
April 25, 2019

Mercy Health providing full care for young kid with rare condition
April 23, 2019

Glen Falls man riding bike cross country and back to honor son’s memory
April 18, 2019

Genetic Test May Reveal Why Texas Baby Ja’bari Gray Was Born Without Skin
April 18, 2019

Fibrocell Announces Collaboration with Castle Creek Pharmaceuticals to Develop and Commercialize FCX-007 Gene Therapy
April 15, 2019

Fibrocell Announces Positive Feedback from Type B End-of-Phase 2 Meeting with FDA on Phase 3 Clinical Trial Design for FCX-007
March 27, 2019

InMed Pharmaceuticals Announces Transition to a Single Cannabinoid Investigational Drug Candidate – INM-755 – for its Epidermolysis Bullosa Program
March 13, 2019

Gene therapies go skin deep to tackle epidermolysis bullosa
March 22, 2019

Potential treatment for cancer in butterfly disease
March 7, 2019

Biotech Company Hopes To Use A Modified Herpes Virus to Treat Rare Skin Conditions
March 5, 2019

Amryt’s epidermolysis bullosa trial extended
March 1, 2019

Phoenix Tissue Repair Does First Patient in Phase 1/2 Clinical Trial of PTR-01 (BBP-589) for Treatment of Recessive Dystrophic Epidermolysis Bullosa (RDEB)
February 22, 2019

Mechanism Underlying Fibrosis in RDEB Could Be New Therapeutic Target
February 18, 2019

Teenager, 19, wears bandages on her hands because of rare skin condition that causes her to break out in blisters at the slightest touch
January 24, 2019

Researchers Create Dressing Glove for EB Based on Patients’ Feedback
January 14, 2019

Kids Teach Lesson on Acceptance With Simple Invitation to ‘Come Say Hi’
January 11, 2019

Ease Phase III Trial Interim Efficacy Results
January 4, 2019

Four Patients Treated in Phase 2 Trial Testing Topical Gene Therapy, KB103, for Wound Healing
January 2, 2019


DEBRA launches clinical trial to investigate using cannabinoid medicines to treat symptoms of skin condition
December 28, 2018

Abeona Therapeutics Details Pathway for Advancing Lead Clinical Programs and Unveils New Cystic Fibrosis Program Born from Next Generation AIM Vector Platform at 2018 R&D Day
December 6, 2018

Teen swimmer with rare skin condition receiving overwhelming support
December 5, 2018

Man bicycles across the U.S. and back to raise money for rare disease
November 23, 2018

Luis Ortiz shares emotional tale of defecting to the U.S. to help his daughter with rare skin condition
November 19, 2018

Fibrocell Receives Guidance from FDA on Phase 3 Clinical Trial Design for FCX-008
October 25, 2018

‘It’s a lot of trial and error’: Saskatoon mom shares what it’s like to care for a child with Epidermolysis Bullosa
October 24, 2018

Krystal Biotech Announces Positive Interim Results from Placebo-Controlled Phase 1/2 Trial of KB103
October 15, 2018

UK’s Amryt to Open US Clinical Trial Sites for Epidermolysis Bullosa
September 10, 2018

The Journey Of Hope
August 25, 2018

Seriously Ill Child Wishes To Meet Travis Meyer
August 15, 2018

Researchers Reveal Cause of Aggressive Skin Cancer in Patients with Butterfly Syndrome
August 10, 2018

Diacerein 1% Ointment for Epidermolysis Bullosa Receives Fast Track Designation
August 9, 2018

Amryt’s AP101 Granted Rare Pediatric Disease Designation for EB
August 6, 2018

RegeneRx Licensee GtreeBNT Enters into Joint Venture to Globally Develop RGN-137 for Treatment of Epidermolysis Bullosa
August 2, 2018

Bicyclist raising awareness for rare skin disease pedals across Montana
August 1, 2018

Warren Haynes, John Medeski, George Porter Jr., Joe Russo Announce Benefit Concert At The Cap
July 24, 2018

Phoenix girl with rare skin condition making progress
July 18, 2018

Med Tech Company Launches Clothing Line That Protects The Skin of “Butterfly” Children
July 17, 2018

ProQR Initiates Phase ½ Clinical Trial of QR-313 for Dystrophic Epidermolysis Bullosa
June 28, 2018

Castle Creek Pharmaceuticals Announces First Patient with Epidermolysis Bullosa Enrolled in Pharmacokinetics Study of Diacerein 1% Ointment
June 25, 2018

Ride for Epidermolysis Bullosa
May 31, 2018

Abeona Therapeutics Announces Opening of Commercial Gene & Cell Therapy Manufacturing Facility in Ohio
May 31, 2018

U.S. FDA Grants Fast Track Designation for Krystal Biotech’s KB103 for the Treatment of Dystrophic Epidermolysis Bullosa
May 24, 2018

BERG Announces FDA Orphan-Drug Designation of BPM 31510 for the Treatment of Patients with Epidermolysis Bullosa
May 23, 2018

Trial Shows Abeona’s Gene Therapy EB-101 Helps Wounds Heal in RDEB Patients
May 21, 2018

Fibrocell Reports on Interim Results and Progress of Phase ½ Clinical Trial of FCX-007 Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa
May 21, 2018

FDA Grants Rare Pediatric Disease Designation to EBS Treatment
May 16, 2018

Dystrophic Epidermolysis Bullosa Treatment Receives IND Clearance
April 26, 2018

Man bikes thousands of miles to honor son and raise money for rare disease
April 24, 2018

How a Meeting Between Regulators and the Epidermolysis Bullosa Community Improved Our Understanding of the Burden of a Rare Disease
April 23, 2018

Music Attorney Doug Davis Combines Career Success With a Passion for Causes
April 18, 2018

‘I can’t imagine my life without him,’ says Tina Boileau after the death of son Jonathan Pitre
April 6, 2018

When Butterfly Children Grow Up
March 27, 2018

FDA To Meet with Pair of Rare Advocacy Groups
March 9, 2018

Dad Who Lost Baby to EB Setting Out on Cross-country Bike Ride to Raise Awareness, Funds
March 5, 2018

A Common Measure for an Uncommon Disease
February 26, 2018

From the Top Down: Fibrocell Studies Adults with Goal to Treat Pediatric Patients
February 22, 2018

Gene Therapy for the “Butterfly Children”
February 8, 2018

Rare Disease Patients and Families Find Hope in Research
February 2018

Fibrocell Announces FDA Allowance to Initiate Pediatric Enrollment in Phase 1/2 Clinical Trial of FCX-007 for the treatment of Recessive Dystrophic Epidermolysis Bullosa
January 30, 2018

Abeona Receives FDA Regenerative Medicine Advanced Therapy Designation for EB-101 Gene Therapy in Epidermolysis Bullosa
January 29, 2018

NIH to plow $190M into genome editing therapy drive
January 24, 2018

Cell Therapy Trial Creates Skin Cells for Rare Disease Patients
January 24, 2018


Jonathan Pitre, mother discussing with doctors possible return home
December 22, 2017

FDA approves novel gene therapy to treat patients with a rare form of inherited vision loss
December 19, 2017

2 Gene Mutations Identified as Possible Cause of EBS in One Patient, Researchers Say
December 5, 2017 

First, Do No Harm
November 2017

A Dying Boy Gets a New, Gene-Corrected Skin
November 8, 2017

Gene-Therapy Grafts Have Repaired a Child’s Devastating Skin Disorder
November 8, 2017

This little girl’s skin is so fragile that even hugging hurts
November 8, 2017

Gene Therapy Creates Replacement Skin to Save a Dying Boy
November 8, 2017

Fighting for a Cure: debra of America’s 19th Annual Benefit
November 6, 2017

GOP Tax Reform Bill Would Repeal Orphan Drug Research Credits
November 2, 2017

NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)
November 2, 2017

BERG Receives Partners in Progress Award for Efforts in Treating Epidermolysis Bullosa
November 2, 2017

Benefit at Lanai Lounge in memory of area man with rare disorder
September 29, 2017

Castle Creek Pharmaceuticals Announces First IGA Scale for Epidermolysis Bullosa Simplex Clinical Research
September 27, 2017

Fibrocell Reports Interim Results of Phase 1/2 Clinical Trial of FCX-007 Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa
September 26, 2017

Amicus Therapeutics Announces Top-Line Phase 3 Results for SD-101 in Epidermolysis Bullosa
September 13, 2017

Abeona Therapeutics Receives FDA Breakthrough Therapy Designation for EB-101 Autologous Cell Therapy in Epidermolysis Bullosa
August 29, 2017

Promising Topical Treatment Options for Epidermolysis Bullosa Simplex Patients
August 22, 2017

Abeona Therapeutics Receives Guidance from FDA to Commence Pivotal Phase 3 for EB-101 Gene Therapy for Patients with Epidermolysis Bullosa
July 17, 2017

U team discovers ‘powerhouse’ new treatment in fight against deadly skin disease
June 27, 2017

The confidence to turn empathy into action | Emily Milan Rea | TEDxLondon
June 22, 2017

Glens Falls man plans to pedal 8,000 miles to raise money, awareness of EB
June 24, 2017

Developing a Gene Therapy with Transformative Potential for Patients with Recessive Dystrophic Epidermolysis Bullosa
June 19, 2017

‘Butterfly child’ gets help from specialist with experience in treating her rare skin condition
June 14, 2017

Castle Creek Pharmaceuticals Announces First Patient Enrolled in DELIVERS Study of Diacerein 1% Ointment for Epidermolysis Bullosa Simplex
June 5, 2017

Amicus Therapeutics Receives Rare Pediatric Disease Designation for SD-101 for Patients with Epidermolysis Bullosa
May 31, 2017

Butterfly babies
May 30, 2017

Abeona Therapeutics Receives Rare Pediatric Disease Designation for EB-11 Gene Therapy Product for Patients with Epidermolysis Bullosa

May 30, 2017

Pharma – Advocacy Partnerships: How the BERG – debra partnership helps EB patients
May 29, 2017

Abeona Therapeutics Receives FDA Orphan Drug Designation for EB-101 Gene Therapy Product for Patients with Epidermolysis Bullosa– Abeona Therapeutics
May 25, 2017

BERG Announces New Partnership with debra of America to Tackle Epidermolysis Bullosa – a Rare Genetic Tissue Disorder
May 15, 2017

Fibrocell Announces Data Safety Monitoring Board Recommends Continuation of Phase 1/2 Clinical Trial of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa
May 8, 2017

Butterfly child: Son’s rare illness helps Centralia family appreciate life
May 7, 2017

Little Boy Blisters When He’s Touched Due to Rare Disorder
May 4, 2017

Abeona Therapeutics Provides Update on EB-101 Gene Therapy for Severe Form of Epidermolysis Bullosa from the Society for Investigative Dermatology Conference
May 2, 2017

Amryt Pharma Enrols First Patient In Epidermolysis Bullosa Trial – Alliance News, London South East
April 24, 2017

Los Angeles Woman with Epidermolysis Bullosa Survives
April 6, 2017

Amicus Therapeutics Completes Enrollment in ESSENCE Phase 3 Epidermolysis Bullosa Clinical Study
April 3, 2017

Abeona Therapeutics Receives Orphan Drug Designation in the European Union for EB-101 Gene Therapy Clinical Trial for Epidermolysis Bullosa
March 8, 2017

Amryt Pharma Gets Go-Ahead For Phase 3 Trial of Skin Disorder Drug
March 6, 2017

Guest Post: debra of America on Epidermolysis Bullosa
March 3, 2017

Nurse highlights Epidermolysis Bullosa – a condition which causes her baby’s skin to tear
February 28, 2017

Fibrocell Announces Dosing of First Patient in Phase I/II Clinical Trial of FCX-007 Gene Therapy for Treatment of Recessive Dystrophic Epidermolysis Bullosa
February 23, 2017

The Worst Disease You’ve Never Heard Of
February 7, 2017

Epidermolysis Bullosa: Boy Grows Up In Danger Of Losing His Skin
February 6, 2017

My Son’s Skin Blisters When I Hug Him
February 1, 2017

Research into Blisters Offers Hope for “Butterfly Children”
February 2017

Donations providing new bath for teen with excruciating skin disorder in Staten Island
January 31, 2017

Tarix Orphan Receives Rare Pediatric Disease Designation for TXA127 for Recessive Dystrophic Epidermolysis Bullosa (RDEB)
January 18, 2017

Good Cause: debra of America
January 17, 2017

How One Little EB Super Cutie is Changing Her World
January 11, 2017

Making Progress in Rare Diseases
January 9, 2017

Fibrocell Announces FDA Fast Track Designation of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa
January 5, 2017


Gene Therapy Offers Hope for “Worst Disease You’ve Never Heard Of”
December 21, 2016

President Obama signs the 21st Century Cures Act
December 13, 2016

Using my voice after two years of silence
December 14, 2016

CRISPR/Cas9-based genetic correction for recessive dystrophic epidermolysis bullosa
December 8, 2016

Senate Votes 94-4 in Favor of 21st Century Cures Act #curesnow
December 7, 2016

Parents turn tragedy into help for others
December 5, 2016

The Bravest Bulldog
December 2, 2016

Amryt secures €20M to fund pivotal rare disease trial
December 2, 2016

This Is What an Invisible Disease Looks Like
November 15, 2016

Manasquan rallies around 9-year-old with rare disease
November 14, 2016

Join debra of America and the Fight Against EB
November 3, 2016

Abeona Therapeutics Announces JAMA Publication of Positive Phase 1 Study Results for EB-101 Gene Therapy Clinical Trial for Epidermolysis Bullosa
November 2, 2016

Gene therapy for blistering skin disease appears to enhance healing in clinical trial
November 1, 2016

All for baby Nash; Family thanks community for help after their son was born with rare, painful skin disease
October 27, 2016

Teenager whose fragile skin falls off at the slightest touch has spent his life wrapped in a cocoon of bandages to prevent a deadly infection
October 10, 2016

Topical Diacerein Showing Promise for Epidermolysis Bullosa
October 3, 2016

The worst disease you never heard of…and why it matters to you | Jakub Tolar | TEDxFargo
September 28, 2016

Spurring Drug Development for Life-Threatening, Rare Pediatric Conditions
September 22, 2016

Fibrocell Completes Enrollment in NC1+ Cohort of Phase I/II Clinical Trial of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa
September 19, 2016

Abeona Therapeutics Enrolls 5th Patient in Phase 1/2 Gene Therapy Clinical Trial for Epidermolysis Bullosa
September 8, 2016

Abeona Therapeutics Enrolls 5th Patient in Phase 1/2 Gene Therapy Clinical Trial for Epidermolysis Bullosa
September 8, 2016

FDA Grants TXA127 Orphan Drug Status for Rare Genetic Skin Disorder
September 7, 2016

When A Child Who Was Supposed To Die Grows Up
August 25, 2016

Inherited epidermolysis bullosa and squamous cell carcinoma: a systematic review of 117 cases
August 20, 2016

Leg amputation and dystrophic epidermolysis bullosa: A case report with 15 years of follow-up
August 18, 2016

‘If I don’t do this, I’ll pass away…’ Jonathan Pitre on way to Minnesota for stem cell transplant
August 17, 2016

Members Making a Difference: Brian Raphael, MD
Summer 2016

Fibrocell Announces First Subjects Enrolled in Phase I/II Clinical Trial of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa
July 27, 2016

Do-gooders raise cash for sick Dyker teen
July 6, 2016

Tarix Orphan Announces Positive Results with TXA127 in Animal Model of Dystrophic Epidermolysis Bullosa (DEB)
June 27, 2016

Assemblyman Bob Oaks to pass epidermolysis bullosa resolution
June 16, 2016

Glens Falls man plans 7,000-mile trip to raise awareness for EB
June 15, 2016

Saving Jonathan Pitre: 'Butterfly Boy' heading to U.S. for therapy that could change his life
June 4, 2016

Ten-year-old Raises Thousands for Friends
June 2, 2016

The gene editor CRISPR won't fully fix sick people anytime soon. Here's why
May 3, 2016

Easton Friedel is getting ready for school
May 3, 2016

Fibrocell and Intrexon Announce Allowance to Commence Phase I/II Trial for FCX-007 for the Treatment of Recessive Dystrophic Epidermolysis Bullosa (RDEB)
April 18, 2016

8-year-old inspires six-figure fundraiser
March 11, 2016

Researchers reveal how butterfly disease patients develop cutaneous squamous cell carcinomas
March 11, 2016

Virginia Delegate Chris Peace Recognizes debra of America February 17 2016
February 17, 2016

Legislative Research: VA HR127 | 2016 | Regular Session
Virginia House Resolution 127

February 17, 2016

Finding a Cure For a Life of Constant Pain
February 5, 2016

The Worst Disease You've Never Heard Of...
February 2, 2016

Harrowing ads out of Havas Worldwide Tonic shine light on rare genetic disease
January 14, 2016

Havas Worldwide Tonic for Debra of America: #ItWontHurtToWatch
January 13, 2016

Art & Sound Draws a Crowd to Gallery Opening Featuring Paintings by Thomas Misisco
January 10, 2016



Baby With the 'Worst Disease You’ve Never Heard Of'
December 19, 2014

Community mourns loss of CNY eighth-grader with rare disorder
December 9, 2014

Walk Sunday will educate and raise research money for rare skin tissue disorder
October 30, 2014

'Hope for Baby Easton' meet a 12-year old with the same skin disease
October 30, 2014

Help raise awareness of rare disease
October 29, 2014

'Disease you've never heard of' does not stop 10-year-old and family seek better treatment, cure
October 28, 2014

Living with EB: The worst disease you've never heard of
October 28, 2014

Playwrights earn national recognition
October 25, 2014

Central Indiana family of ‘Butterfly Kid’ raising awareness about disorder
October 20, 2014

Show your volunteer spirit for two year old with rare skin disorder
October 17, 2014

Letter: Support research for rare skin disorder
October 13, 2014

Orphan Drug From Scioderm Aims to Treat Rare Skin Disease
October 7, 2014

Living with the Worst Disease you’ve never heard of – Mats Wilander’s story
October 1, 2014

“Hidden Jewel”- The #1 Rated Art Studio in NYC Hosts 10th Year Anniversary Event and Fundraiser
September 9, 2014

EB Fundraiser returns to West Side
August 20, 2014

The 2nd Annual Mats Wilander Foundation Tennis Pro-Am
August 18, 2014

Mats Wilander to host charity event in August to support Epidermolysis Bullosa
August 13, 2014

The 2nd Annual Mats Wilander Foundation Tennis Pro-Am
August 11, 2014

Healing the 'butterfly children': Treatment offers hope for rare skin disease
August 7, 2014

Gustine boy to get his wish
July 26, 2014

National 'awareness' award coming for Baby Easton's family
July 25, 2014

West Side Tennis Club to Host 2nd Annual Mats Wilander Foundation Tennis Pro-Am
July 23, 2014

Fibrocell Science Takes Active Role to Support Dystrophic Epidermolysis Bullosa Patient Advocacy Group
July 23, 2014

Baby Easton’s Remarkable Progress
July 22, 2014

E. Texas boy dances for rare skin disease awareness
July 22, 2014

Justin Timberlake sends limo, front-row concert tickets to Long Island boy with rare disease
July 11, 2014

Man with rare disease takes extra precautions in heat
July 9, 2014

Cobb Co. baby born with rare skin blister disease
July 9, 2014

'Butterfly child' leaves behind many local memories
July 7, 2014

2nd Annual Mats Wilander Foundation Tennis Pro-Am
July 2014

Long Island boy’s ‘bucket list’ tapers down to one item as he prepares for surgery
June 17, 2014

Rare Disease Focus of Documentary
June 14, 2014

Girl can't hug parents because rare skin condition causes her to blister when touched
June 12, 2014

Scioderm Names Ronald Nardi, Ph.D. Chief Scientific Officer
June 12, 2014

The 2nd Annual Mats Wilander Foundation Tennis Pro-Am benefiting debra of America
June 4, 2014

Father's Day Heroes
May 30, 2014

Utah Family Builds Family of Adopted Children with Rare Condition
May 26, 2014

Robbie Twible with Epidermolysis Bullosa meets METS third baseman David Wright and Hopes to Meet Ellen DeGeneres Next
May 22, 2014 - May 27, 2014

debra of America Office in Second Life
May 16, 2014

Butterfly Wishes For Ellie
May 15, 2014

King For A Day
May 14, 2014

Baby Born With Rare 'Butterfly' Skin Condition
May 13, 2014

Son’s rare genetic condition makes every day a blessing for family
View Photo Gallery
May 11, 2014

Butterfly Children
May 9, 2014

EB: The Quiet Struggle of Butterfly Children (Page 13)
May 2014

Love of Lucas: Family raises more than $50,000 over the years to help those battling EB
April 23, 2014

Texas Spitfire Abbie Evans Fights Epidermolysis Bullosa In Cary Bell's "Butterfly Girl"
April 16, 2014

Scioderm close to fully developing new treatment for connective tissue disorder
April 2, 2014

Local Child Star Shares ‘Heaven Is For Real’ Memories
April 2, 2014

Heaven Is For Real Fundraiser Screening
April 2, 2014

Scioderm Completes Enrollment of Phase 2b Study of SD-101, a Novel Topical Therapy for Patients with Epidermolysis Bullosa
April 1, 2014

Love for Lucas fundraiser to show prescreening of ‘Heaven Is for Real’
March 27, 2014

Local Family Raises Awareness For Rare Skin Disease
March 17, 2014

Rocky Point High's Kelly McCauley Raises Funds for Butterfly Children
March 17, 2014

Eubanks family grapples with 4-year-old son’s rare skin condition
February 5, 2014

Scioderm Initiates Phase 2B Study of SD-101, A Novel Topical Therapy, for Patients with Epidermolysis Bullosa
January 6, 2014


Girl with tough spirit, fragile skin sheds bandage cocoon
December 26, 2013

Girl with tough spirit, fragile skin sheds bandage cocoon
December 26, 2013

Scioderm, Inc. receives Positive Opinion from European Orphan Medicinal Products Committee for Novel Topical Therapy to Treat Epidermolysis Bullosa
December 17, 2013

Mats Wilander #5 "Finding a Cure"
November/December 2013

Eight-year-old doesn’t let genetic disorder stop him
November 14, 2013

'Butterfly children': The tragic condition that makes kids' skin blister, fall off
November 8, 2013

Brewster Volleyball Celebrates Senior Night
November 7, 2013

'Butterfly Child' Finds Strength To Live With Skin Disorder
November 3, 2013

Argir tackles her biggest challenge: Running in NYC Marathon for DEBRA
November 2, 2013

Medically Improved And Back In School, Charlie Knuth, 7, Is Living It Up
November 2, 2013

Help Your Skin, Help Their Skin with Retrospect’s Initiative
November 1, 2013

UH Fertility Center Gives New Hope to Couple Who Lost Their Son to Rare Genetic Disorder
November 2013

Baby Easton’s parents reflect during National EB Awareness week
October 30, 2013

Scioderm Honored with Partners in Progress Award from DEBRA of America
October 30, 2013

Fibrocell Science Honored with Partner in Progress Award from DEBRA of America
October 25, 2013

Scioderm's CEO Dr. Robert Ryan Appointed Member of DebRA Board
October 21, 2013

Be Part of the Cure for Epidermolysis Bullosa (EB) - East Coast Premier at Spring Lake Community House
October 6, 2013

The worst disease you’ve never heard of
September 16, 2013

Sisters Living With Blistering Skin Condition
September 14, 2013

The Cure
September 2013

Mats Wilander hosts the Inaugural MW Foundation Tennis Pro-Am benefiting Debra of America at West Side Tennis Club in Queens, New York
August 28, 2013

Former Tennis Great Mats Wilander Stops By Primetime To Talk About The State Of Tennis Today
August 20, 2013

Family, Friends, Supporters Gather to Wish Baby Easton A Happy 1st Birthday
August 18, 2013

Tennis Legend Mats Wilander and debra of America Hold Tennis Pro-Am during 2013 US Open to Benefit Children with Rare Genetic Disorder
August 7, 2013

Site of the Day: August 2013
August 5, 2013

'Butterfly Bash' Raises $8,700
July 25, 2013

Local Toddler Battles Rare Genetic Disease
July 24, 2013

June 19, 2013

U of M Researchers Find Novel Gene Correction Model For Epidermolysis Bullosa
June 6, 2013

Junctional Epidermolysis Bullosa Incidence and Survival: 5-Year Experience of the DebRA of America Nurse Educator
May 31, 2013

Westland Restaurant To Pay $50,000 For Denying Service To Family
May 8, 2013

2nd 'Love For Lucas' Event Combats 'Worst Disease You've Never Heard Of'
May 2, 2013

Young Girl Bravely Deals With Painful Skin Condition
March 14, 2013

Run for Rafi on Sunday March 10
March 1, 2013

DebRA of America for Epidermolysis Bullosa Celebrates Rare Disease Day
February 25, 2013

Girl Inspires Fight For A Cure
February 24, 2013

A Child’s Struggle Inspires Drive For A Cure
February 23, 2013

People With 'Butterfly' Skin Condition Triumph Through Pain
February 22, 2013

Her Delicate Skin Belies A Tough Spirit
February 18, 2013

No Elevator, So Wheelchair-Bound Student Can't Attend S.I. School
February 14, 2013

At Home With Baby Easton
January 31, 2013

The Avenger: Student Is Teacher's Inspiration for Gaming Controller
January 10, 2013

Shire Acquires Lotus Tissue Repair
January 8, 2013

Shire Acquires Lotus Tissue Repair, Inc.
January 8, 2013

Shire Snaps Up Third Rock Ventures-Backed Lotus Tissue Repair
January 8, 2013


Port Odd Fellows Support Ailing Haverhill Teen
December 28, 2012

Top 10 News Stories of 2012 in Syracuse and Central New York
December 26, 2012

Brave Little “Butterfly Child”
December 26, 2012

Rare Skin Disorder Does Not Stop This Little Fighter
December 12, 2012

Beyond her skin: 11-year-old Girls Does Not Let Disease Define Her
December 3, 2012

Sun Prairie Boy With Rare Disease Gets Breakthrough Treatment
November 23, 2012

Q&A with an EB Advocate: Jamie Silver of Jackson Gabriel Silver Foundation, Part I
November 6, 2012

New York City Marathon Canceled, Bloomberg Says
November 2, 2012

EB: "the worst disease you've never heard of"
October 24, 2012

Charity DEBRA unveils ‘peel here’ app with Publicis London to highlight pain of those who suffer from Epidermolysis Bullosa
October 23, 2012

Larchmont Man to Run ING Marathon to Raise Money For Rare Skin Disease
October 22, 2012

Tweeting to Support EB Families
October 16, 2012

Arcadia boy with rare disease celebrates first birthday
October 11, 2012

Chevy Chase Man to Run ING New York City Marathon Nov. 4 to Raise Money and Awareness for Rare Genetic Disease
October 9, 2012

Wheels for a special 11-year-old
September 20, 2012

Rare Disease Spurs Utah County Woman To Be Democratic Activist
September 2, 2012

Exploring New Frontiers
August 31, 2012

Saving Easton: Auburn Baby Born With Rare, Severe Skin Disease
August 29, 2012

Community Rallies Around Cayuga County Family Whose Newborn Son Has Rare, Incurable Skin Condition
August 28, 2012

Worth Talking About - Generosity
August 27, 2012

Family, Friends Rally For CNY Baby Born With Rare, Painful Skin Disorder
August 27, 2012

Campaign For Baby Brystal Suffering From EB, Incurable "Worst Disease You've Never Heard Of"
August 24, 2012

A Cheeky Smile That Masks The Pain
August 21, 2012

How Your Next Home Goods Purchase Can Help a Great Cause
August 13, 2012

Rare Skin Disorder Bonds Families At Osceola Conference
August 1, 2012

Kids With Rare Skin Disease Search For Answers
July 31, 2012

DebRA of America Holds 6th Biennial Patient Care Conference For Epidermolysis Bullosa Patients and Medical Experts From July 30 to August 1 in Orlando, Florida
July 26, 2012

Merch Girl: The Story of Finding Beauty Through an Incurable Skin Disease
July 19, 2012

Original Play Debuts In Casper
July 19, 2012

Those With Rare Genetic Skin Disorder Epidermolysis Bullosa Fight For Normalcy
June 21, 2012

Facebook, Pinterest And Awards
June 18, 2012

Lilly Pulitzer Event For DebRA
May 23, 2012

Family Battles State Over Hospice Care Decision
May 22, 2012

Louisville Mom Forms Advocacy Program After Losing Daughter To Rare Disease
May 16, 2012

Couple Raising Awareness Of Rare Disease That Took Son’s Life
May 11, 2012

Kernersville Boy Lives With Rare Skin Disorder
May 7, 2012

Arizona Girl Fights Rare Skin Condition
April 9, 2012

Moms Run New York City Half-Marathon For A Special Cause
March 16, 2012

Interview: Butterfly Benefit Fashion Show And Luncheon
March 15, 2012

Charity Race For 4-Year Old With Rare Disease
March 15, 2012

Memorializing Governor Andrew M. Cuomo To Proclaim March 11, 2012, As Epidermolysis Bullosa Awareness Day In The State Of New York
March 11, 2012

A 'Butterfly' on Jerusalem Stone
March 9, 2012

DebRA International and DebRA of America Launch, the International Patient Reported Registry for Epidermolysis Bullosa (EB)
February 29, 2012

DebRA International and DebRA of America Launch, the International Patient Reported Registry for Epidermolysis Bullosa (EB)
February 29, 2012

UWS Fundraiser: “Rafi’s Run” To Benefit 4-Year-Old Upper West Sider Rafaella Lily Kopelan
February 27, 2012