Here you will find news articles and press releases that relate to Epidermolysis Bullosa (EB).
2023
Chiesi Global Rare Diseases Receives FDA Approval for FILSUVEZ® (birch triterpenes) topical gel for the Treatment of Epidermolysis Bullosa
December 19, 2023
Abeona Therapeutics Announces FDA Accepts and Grants Priority Review for Pz-cel Biologics License Application (BLA)
November 27, 2023
debra of America Launches Registry for Individuals and Families Diagnosed with "The Worst Disease You've Never Heard Of" Epidermolysis Bullosa
October 4, 2023
TikToker, 16, With Agonizing Skin Disorder That Causes Blisters and Tearing Shares 'Get Ready With Me' Videos (Exclusive)
October 2, 2023
Abeona poised to seek FDA approval of EB-101
September 1, 2023
Paradigm Therapeutics Acquires Late Stage "Breakthrough Therapy" Designated Therapy for Treatment of All Subtypes of Epidermolysis Bullosa (EB)
August 22, 2023
Breakthrough In Gene Therapy: Epidermolysis Bullosa
August 17, 2023
New Hope for Treating the 4 Main Types of Epidermolysis Bullosa
July 27, 2023
Gene therapy eyedrops restored a boy’s sight. Similar treatments could help millions
July 24, 2023
Skin stem cell therapy helped prevent new wounds in RDEB
July 7, 2023
Gene therapy found to generate C7 protein needed in RDEB in study
June 30, 2023
RHEACELL announces "First Patient In": EB-Haus in Salzburg, Austria starts pivotal study for stem cell therapy
June 27, 2023
Abeona Therapeutics Announces Regulatory Update on Biologics License Application (BLA) for EB-101
June 9, 2023
Approved gene therapy Vyjuvek for DEB soon to be available in US
May 26, 2023
FDA approves first gene therapy for rare skin disease, but costs are outrageous
May 25, 2023
FDA approves Vyjuvek gene therapy gel for DEB patients 6 months and up
May 22, 2023
VYJUVEK Community Statement from Krystal Biotech
May 2023
Gene editing fixes common RDEB mutation in patient-derived cells
April 14, 2023
A devastating skin condition could soon get its first medication, as the frontiers of gene therapy expand
April 3, 2023
Phase 2 trial of cannabinol cream INM-755 is fully enrolled
March 31, 2023
First patients enrolled in trial of RLF-TD011 wound spray for EB
February 17, 2023
Case report describes 4 children with EB and airway ills
February 10, 2023
Blood Test May Help Diagnose Anemia in RDEB Children
January 20, 2023
Jouni Uitto: Passing of a pioneer of EB research (1943 - 2022)
Chiesi Ups Rare Disease Game with $1.48B Amryt Acquisition
January 9, 2023
Immune Cell Receptor FcyRIV Implicated in Development of EBA
January 6, 2023
2022
CRISPR Gene Editing Restores Collagen Production in Mice
November 18, 2022
RHEACELL receives ‘Partners in Progress Award’ from debra of America for Epidermolysis Bullosa research
November 9, 2022
Abeona Therapeutics Announces Positive Topline Results with Both Co-Primary Endpoints Met in Pivotal Phase 3 VIITAL™ Study of EB-101
November 3, 2022
InMed Pharmaceuticals Supports Epidermolysis Bullosa Awareness Week
October 26, 2022
Northern Kentucky community walks for an Epidermolysis Bullosa cure
October 23, 2022
National EB Awareness Week Emphasizes Advocacy
October 21, 2022
Poor Oral Health Can Greatly Affect Quality of Life for Children With EB
September 30, 2022
Krystal Biotech Receives Positive Opinion from EMA Pediatric Committee on the Pediatric Investigation Plan for B-VEC for the treatment of Dystrophic Epidermolysis Bullosa
September 21, 2022
Skin Cancer Is Life-threatening in Junctional EB, Severe RDEB: Study
August 26, 2022
FDA Accepts Krystal Biotech’s Biologics License Application for Dystrophic Epidermolysis Bullosa
August 18, 2022
Teenager with rare, painful condition now calls Colorado home: 'Here, they don't stare'
August 2, 2022
InMed Announces Update on Phase 2 Clinical Trial Investigating INM-755 Cannabinol Cream for Epidermolysis Bullosa
July 25, 2022
Amryt Presents New Analyses from the EASE Phase 3 Trial in Epidermolysis Bullosa at SPD 2022
July 7, 2022
Filsuvez Gel Becomes 1st Therapy Approved in EU for EB Wounds
June 24. 2022
Krystal Biotech says it's on schedule for filing for license with FDA
May 9, 2022
Panel Supports Filsuvez Gel Approval in Europe for DEB, JEB
April 29, 2022
Organizations Rally to Help Ukrainian Rare Disease Patients
April 29, 2022
Rare disease claimed the life of a Savannah baby. Now her parents are fighting to find a cure
April 14, 2022
DNA-spiked gel heals the skin wounds of ‘butterfly children’
March 28, 2022
Infusions of Antibiotic Gentamicin Promote Wound Healing in JEB Trial
March 25, 2022
Abeona Therapeutics Achieves Target Enrollment in Pivotal Phase 3 VIITAL™ Study of EB-101 in RDEB
March 14, 2022
U.S. FDA declines to approve Amryt's topical gel for rare skin diseases
February 28, 2022
Surge in Telehealth Brings Access, Convenience to Rare Disease Patients
February 28, 2022
Nada's Story
February 28, 2022
Pain With Dominant DEB Can Be Severe, Affecting Life Quality
January 14, 2022
Kansas TikTok star passes away, but his legacy remains
January 10, 2022
Oral Surgery Becomes a Painful Nightmare for My Son
January 6, 2022
2021
Wichitan with rare skin condition, global inspiration, dies at 21
December 30, 2021
FDA Extends Decision on Filsuvez Gel for Skin Wounds to February
December 3, 2021
Krystal Biotech Announces Positive Topline Results from GEM-3 Pivotal Trial of VYJUVEK™ in Patients with Dystrophic Epidermolysis Bullosa
November 29, 2021
Swallwell, Peters & Emmer Introduce Bill to Make Genetic and Genomic Testing More Accessible
November 16, 2021
Krystal Biotech and GeneDx Announce Collaboration to Provide No-charge Genetic Testing for Patients with Suspected Dystrophic Epidermolysis Bullosa (DEB)
October 12, 2021
‘Biggest fan’ remembered for his passion for No. 24 team, NASCAR
October 8, 2021
HMP Global’s SAWC Fall Forges Partnerships with Wound Healing Foundation and debra of America as Part of “SAWC Change” Campaign
September 23, 2021
Eloxx Plans to Advance ZKN-013 as Oral Treatment for RDEB and JEB
August 20, 2021
New Mutations Found in Children With Recessive DEB in Vietnam
August 13, 2021
The Girlfriend and Boyfriend With Butterfly Skin [VIDEO]
July 13, 2021
EB-101 Healed Wounds, Eased Pain Up to Six Years in Trial
July 9, 2021
Greensky Bluegrass Welcomes Fruition’s Mimi Naja In Lawrenceville
June 27, 2021
Skin Thickening on Feet of EBS Patients Linked to Pain, Obesity
June 25, 2021
Newly Identified COL7A1 Mutation May Cause Rare DEB Subtype
June 18, 2021
FDA Grants Priority Review for New Drug Application for Oleogel-S10 for the Treatment of Epidermolysis Bullosa
June 3, 2021
Amryt Announces FDA Acceptance of New Drug Application for Oleogel-S10 for the Treatment of Epidermolysis Bullosa
June 2, 2021
Wound-specific Bacteria May Be Targets for DEB Treatment
May 28, 2021
Concerts To Cure Series To Feature Greensky Bluegrass, The Disco Biscuits, More
May 25, 2021
Concerts To Cure Series To Feature Greensky Bluegrass, The Disco Biscuits, More
April 30, 2021
The Man Whose Skin Falls Off | BORN DIFFERENT
April 29, 2021
Amryt Pharma Advances Regulatory Applications for Filsuvez
April 9, 2021
Mitsubishi Electric Classic's Celebrity Challenge to feature Vince Carter, Morten Andersen, Brian Finneran
March 25, 2021
Pleasant Valley girl faces challenges of a rare skin disease
March 20, 2021
Staph Infections Common in Patients with EB
February 18, 2021
How We Began Educating Our Community About EB
February 18, 2021
Marky ‘Butterfly Warrior’ Jaquez has defied all the odds
January 27, 2021
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
January 25, 2021
4 New COL7A1 Mutations in Self-Improving DEB Identified in Case Report
January 13, 2021
2020
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
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
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
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
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
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
2019
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
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
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
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
Man biking across the country to raise awareness for skin disease makes stop in Louisville
May 18, 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
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
2018
DEBRA launches clinical trial to investigate using cannabinoid medicines to treat symptoms of skin condition
December 28, 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
Ride for Epidermolysis Bullosa
May 31, 2018
Abeona Therapeutics Announces Opening of Commercial Gene & Cell Therapy Manufacturing Facility in Ohio
May 31, 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
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
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
2017
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
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
Amicus Therapeutics Receives Rare Pediatric Disease Designation for SD-101 for Patients with Epidermolysis Bullosa
May 31, 2017
Butterfly babies
May 30, 2017
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
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
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
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
2016
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
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
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
2015
Stafford Springs Teenager Facing Rare Skin Disease Receives Support
December 27, 2015
'Butterfly Baby' ready for first Christmas, fights rare medical condition
December 24, 2015
Mats Wilander: My Son and John O'Shea
December 16, 2015
Mats Wilander: My Son and John O'Shea
December 16, 2015
Dream comes true for teenager with rare skin disorder
December 4, 2015
Hilliard family shares EB journey with Darby students
December 2, 2015
Easing the pain of butterfly children; new drug may offer hope
November 13, 2015
Celebrity moms on raising gifted children: Ballerina Julie Kent (Part #1)
November 2, 2015
McKesson Patient Care Solutions Inc. Sponsors Family Day with DebRA of America for Epidermolysis Bullosa (EB) Patients and Families
October 22, 2015
Family of NYC girl with skin-blistering condition sees hope in new drug
July 28, 2015
9-year-old raises $47,000 for best friend with rare skin disease
July 23, 2015
Local family deals with newborn's rare condition
June 26, 2015
Interview of Alexia, 35, Who Suffers From Epidermolysis Bullosa: "You Need To See the Positive Sides As Much As Possible"
April 7, 2015
SoulCycle For An EB Cure
March 21, 2015
Scioderm launches Phase 3 trial for drug to help treat rare skin disease that impacts children
March 19, 2015
Phase 3 Registration Trial Begins for Scioderm’s Epidermolysis Bullosa Treatment
March 19, 2015
Binding Her Wounds: Adopting a Child with Epidermolysis Bullosa (EB)
March 12, 2015
The Worst Disease You've Never Heard Of
February 28, 2015
NDHS senior plans benefit for boy
February 16, 2015
Painters turn out in Baby Easton Friedel's hometown to support epidermolysis bullosa research
February 1, 2015
Butterfly girl: Rare and painful skin disorder doesn't stop Washington teen
January 29, 2015
Fibrocell Science to Present at Biotech Showcase 2015 Conference
January 7, 2015
Scioderm to Present at 33rd Annual J.P. Morgan Healthcare Conference
January 2, 2015
Case report: rapidly healing epidermolysis bullosa wound after ablative fractional resurfacing
January 2015
2014
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
2013
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
Unbreakable
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
2012
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
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 EBCare.org, the International Patient Reported Registry for Epidermolysis Bullosa (EB)
February 29, 2012
DebRA International and DebRA of America Launch EBCare.org, 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
2009-2011
Ohio Teen Doesn’t Let Skin Disease Stand In Way
December 13, 2011
Mogul Using $100 Million In Race To Cure Daughter Lures Novartis
September 7, 2011
Online Community Rallies Around Child
August 2011
A Mother's Plea: Heal My Children's Skin
August 12, 2010
Butterfly Kids: When Skin Blisters Can Kill
July 22, 2010
Rays Of Hope In Battling An Agonizing Disease
March 12, 2010
Bill Requiring Insurance Coverage For Skin Wound Care Signed
June 16, 2009
Cell Therapy Offers Hope For Those That Suffer From EB
April 19, 2009
