Brett Kopelan retweetledi
Congratulations to @debraOfAmerica on a successful event last weekend to conclude #EBAwarenessWeek. What a special way to celebrate and honor the #EB Community.
#EBAwareness #LivingwithDEB #raredisease
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Brett Kopelan
609 posts
Brett Kopelan
@BrettKope
Just trying to cure my daughter's rare genetic disease, Epidermolysis Bullosa, as the Executive Director of debra of America.
Longmont, CO Katılım Mayıs 2013
107 Takip Edilen161 Takipçiler
Brett Kopelan retweetledi
ICYMI: @BrettKope spoke about advanced therapies on the horizion including @AbeonaBio’s EB-101 and @CastleCreekBio’s dabocemagene autoficel.
#EBAwarenessWeek2023 #EBAwarenessWeek #genetherapy #celltherapy
Watch now:
cgtlive.com/view/brett-kop…
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More than 1 therapy is needed to holistically test those with deb.
CGTLive®@CGT_Live
@BrettKope spoke about advanced therapies on the horizion including @AbeonaBio’s EB-101 and @CastleCreekBio’s dabocemagene autoficel. #EBAwarenessWeek2023 #EBAwarenessWeek #genetherapy #celltherapy Watch now: cgtlive.com/view/brett-kop…
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Brett Kopelan retweetledi
It’s #EBAwarenessWeek - spread awareness about EB a rare skin disease that causes extremely fragile skin that blisters and tears with any friction.
Learn more and show support of #EBAwarenessWeek from Oct 25-31: krys.bio/gs7
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Brett Kopelan retweetledi
@BrettKope noted that the approval of @KrystalBiotech's B-VEC #genetherapy represents a major milestone for the #EpidermolysisBullosa treatment landscape.
#EBAwarenessWeek2023 #EBAwarenessWeek
Watch:
cgtlive.com/view/brett-kop…
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This is an incredibly important piece of news 4 investors of cell & gene therapeutics. CGTx, particularly in rare disease, have a much greater chance of approval than other drugs. Durable treatments & curative therapies are getting approved at much higher rates.
Alliance for Regenerative Medicine (ARM)@alliancerm
New analysis from @TuftsMedicalCtr NEWDIGS shared last week at #CGMesa23 shows that cell and gene therapies are substantially outperforming other, less targeted treatments in the clinic. @FierceBiotech covers what the new data means for the sector. fiercebiotech.com/biotech/some-c…
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@jamesv_fdalwyr Wow congrats. She will undoubtedly make immense contributions to HPM and your clients.
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I'm honored to have former senior #FDA leader, Dr. Julie Beitz, join our HPM drug development regulatory team to help bring critical new therapies to those in need!
thefdalawblog.com/2023/10/senior…
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This is a very important milestone for the EB community.
debra of America Launches Registry for Individuals and Families Diagnosed with "The Worst Disease You've Never Hea... prn.to/3F0ZLP8
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Rafi, aka Lily, is in People Magazine. Thx @people for writing about her.
people.com/tiktok-epiderm…
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Brett Kopelan retweetledi
@debraOfAmerica is hosting another great EB Community Regional Meetup for individuals with EB and their families. Each event is an educational and social gathering to stay informed and connect with others in the EB community.
To learn more, please visit: krys.bio/4qy
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@AaronBlank Go electric. While i love my Tesla there are now other viable options. Rivian SUV is nice & next year, Jeep is coming out w/ what looks like a nice one. In 6 months w/ the Tesla i’ve saved a net $650 by charging instead of paying for gas for my previous car, an Expedition.
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It costs nearly $7 a gallon for gas in Porter Ranch, California! Inflation again—> here we grow!!
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Today, in partnership with The Assistance Fund, debra launched a patient assistance program to defray the costs of out-of-pocket medica expenses associated with eb. Expenses like co-pays, and insurance premiums are eligible for help...
tafcares.org/newsroom/press…
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Can we get Rafi’s video 250,000 views and 2,000 comments? She’s getting up there already, 80,000 views more than 600 comments since this morning. tiktok.com/t/ZT8jry72t/
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@KrystalBiotech @SocietyPedsDerm See you there. I am a speaker.
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#Krystalbiotech is a proud supporter of the @SocietyPedsDerm (SPD) and is excited to attend the Annual Meeting from July 13-16 in Asheville, NC.
#SPD2023 #RareDisease #GeneTherapy
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Brett Kopelan retweetledi
Thank you @CBSNews for highlighting the exciting FDA approval of VYJUVEK @KrystalBiotech & its impact on quality of life for individuals with DEB like 15 y/o Rafi, daughter to debra’s Executive Director Brett Kopelan. Watch below. #genetherapy
cbsnews.com/colorado/news/…
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Here is Rafi and ne on CBS this evening talking about @KrystalBiotech newly approved gene therapy for EB.
cbsnews.com/colorado/news/…
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Amazing new today. Krystal Bio's topically applied gene therapy was approved by the FDA! This is the first drug approved to treat EB and it has proven to be safe and effective. It's going to change Rafi's life.
ir.krystalbio.com/news-releases/…
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Fun at EBMRF’s event last night. Rafi loved meeting Kaley Cuoco and Courtney Cox.
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Brett Kopelan retweetledi
I was honored this week to host the #RDDS keynote panel with these amazing advocates @LeahEDSCN2A @BrettKope & Simon Frost. each shared their stories & lessons learned as they chart the path to urgently needed therapies for their children's #RareDiseases. #nextgenerationadvocates
Global Genes@GlobalGenes
“Using the right tools to measure the right things is critical for drug trials” -Leah Schust Myers, Plenary Session: Charting the Path to Treatments @FamilieSCN2A #RDDS #DrugDevelopment #CareAboutRare
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