Perlara (@perlarapbc) 's Twitter Profile
Perlara

@perlarapbc

perlara.com The first biotech public benefit corporation est. 2014. Direct-to-patient and decentralized. Co-owner @epalrestat

ID: 2172622974

linkhttp://cureodysseys.com calendar_today03-11-2013 18:48:03

6,6K Tweet

4,4K Followers

2,2K Following

Ethan Perlstein bio/acc (@eperlste) 's Twitter Profile Photo

Community medicine A rebel alliance of rare parents united as the PIGN-CDG Cure Collective to fund a drug repurposing project. One of the top 3 hits is ascorbyl palmitate aka fat-soluble vitamin C - and it's working!

Community medicine

A rebel alliance of rare parents united as the PIGN-CDG Cure Collective to fund a drug repurposing project. 

One of the top 3 hits is ascorbyl palmitate aka fat-soluble vitamin C - and it's working!
Akhilesh Pandey Lab (@lab_pandey) 's Twitter Profile Photo

Happy to present our paper on N-glycoproteomic and proteomic alterations in SRD5A3-CDG, a rare congenital disorder of glycosylation – out now in the journal Glycobiology Oxford Journals SFGlycobiology. Read online at academic.oup.com/glycob/article…

Akhilesh Pandey Lab (@lab_pandey) 's Twitter Profile Photo

We show significant changes in glycopeptide abundance along with alterations in glycosylation machinery, lysosomal and mitochondrial proteins in SRD5A3-deficient fibroblasts. Led by Kishore Garapati from our team in collaboration with Sappani Foundation Perlara Morava Eva

David Fajgenbaum, MD (@davidfajgenbaum) 's Twitter Profile Photo

Did you know a simple derivative of vitamin C is transforming the lives of children with congenital disorders of glycosylation? This breakthrough, led by Dr. Ethan Perlstein bio/acc and the CDG Cure Collective is helping kids experience fewer seizures and improved symptoms—an incredible leap

Curetopia (@endrarediseases) 's Twitter Profile Photo

Curetopia invites you on an odyssey of discovery as we illuminate the dark matter of the human genome and attempt to eradicate rare genetic diseases for all humankind. curetopia.xyz

Ethan Perlstein bio/acc (@eperlste) 's Twitter Profile Photo

Excited to launch my first DeSci project/BioDAO called Curetopia! If you’re a rare disease community member, scientist or clinician working in rare, a curious crypto or TradBio investor, or just a DeSci enthusiast, check out the site 👇

Bio Protocol (@bioprotocol) 's Twitter Profile Photo

New BioDAOs are cooking 🔥 Say hello to Curetopia (Curetopia), tackling the $1T Rare Disease space. There are around 10,000 rare diseases, each with an impassioned community of patient and patient families urgently seeking cures. But the average market size of each rare

Bio Protocol (@bioprotocol) 's Twitter Profile Photo

> Watch Ethan Perlstein bio/acc's talk from DeSci Berlin: youtube.com/watch?v=9OWEtq… > Learn more about Curetopia: curetopia.xyz > Join Curetopia's Telegram: t.me/curetopia

Ethan Perlstein bio/acc (@eperlste) 's Twitter Profile Photo

📣 Attention all rare disease warriors and DeSci enthusiasts in NYC: Curetopia (Curetopia) launch party is next Wednesday Jan 8 and graciously hosted by Dr. Shelby at Compound! Limited availability so please register for a spot 👇

📣 Attention all rare disease warriors and DeSci enthusiasts in NYC:

Curetopia (<a href="/endrarediseases/">Curetopia</a>) launch party is next Wednesday Jan 8 and graciously hosted by <a href="/shelbynewsad/">Dr. Shelby</a> at <a href="/CompoundVC/">Compound</a>!

Limited availability so please register for a spot 👇
Curetopia (@endrarediseases) 's Twitter Profile Photo

Curetopia community call tomorrow Jan 10 @ 3PM EST We’ll discuss the upcoming $CURES governance token auction and how DeSci will be the talk of JPM Health week x.com/i/spaces/1DXxy…

MiraDAO (@0xmiradao) 's Twitter Profile Photo

Hi team! I've been quiet since the last tweet on Monday. The reality is that during the week, it's hard for me to make a lot of progress on $MIRA because I am a full time startup CEO, and I have a sick child to take care of, but I am committed to this with the time I have on

Effie Parks (@onceuponagene) 's Twitter Profile Photo

✨ It Was Rare & I Was There ✨ Join us on Rare Disease Day + February 28th for an evening of connection, celebration, and community! We’re gathering at Brigantine Portside Pier from 3:30–6:30 PM for food, drinks, music, and rare disease festivities. At the end of the event,

✨ It Was Rare &amp; I Was There ✨

Join us on Rare Disease Day + February 28th for an evening of connection, celebration, and community! We’re gathering at Brigantine Portside Pier from 3:30–6:30 PM for food, drinks, music, and rare disease festivities.

At the end of the event,
Sri Kosuri (@srikosuri) 's Twitter Profile Photo

It’s been a tough few weeks. My 10yo daughter was diagnosed with a very rare, aggressive cancer called interdigitating dendritic cell sarcoma (IDCS). I’m reaching out to identify clinicians/patients who have encountered pediatric IDCS, indeterminate dendritic cell histiocytosis

It’s been a tough few weeks. My 10yo daughter was diagnosed with a very rare, aggressive cancer called interdigitating dendritic cell sarcoma (IDCS). I’m reaching out to identify clinicians/patients who have encountered pediatric IDCS, indeterminate dendritic cell histiocytosis
Arcadia Science (@arcadiascience) 's Twitter Profile Photo

Happy Darwin Day! Today we’re thinking about how to use evolution to accelerate biomedical research. We think the answer is to expand the repertoire of organismal models. Search for the best ones using our new portal Zoogle: zoogle.arcadiascience.com/about 🧵

CDG CARE (@cdgcareorg) 's Twitter Profile Photo

CDG CARE is kicking off a new chapter with a brand-new Core Team and updated 2025 Board roles. Our passionate leaders are set to drive innovation and strengthen our CDG community. Congrats to our inspiring team!

CDG CARE is kicking off a new chapter with a brand-new Core Team and updated 2025 Board roles. Our passionate leaders are set to drive innovation and strengthen our CDG community. Congrats to our inspiring team!
Ethan Perlstein bio/acc (@eperlste) 's Twitter Profile Photo

Let’s go parabolic in the final 24 hours of the $CURES auction 📈 $520,000 raised so far despite the market sentiment 💪 Max target is $3M 🎯

Paul Kohlhaas bio/acc (@paulkhls) 's Twitter Profile Photo

Anyone who says DeSci is a scam is jaded by short termism and has lost the values that created Bitcoin and Ethereum. Solving long term problems for real people. @bioprotocol first BioDAO on Solana is by Harvard alumni and biotech legend Ethan Perlstein bio/acc who has dedicated his life to

Anyone who says DeSci is a scam is jaded by short termism and has lost the values that created Bitcoin and Ethereum. Solving long term problems for real people.

@bioprotocol first BioDAO on Solana is by Harvard alumni and biotech legend <a href="/eperlste/">Ethan Perlstein bio/acc</a> who has dedicated his life to
Ethan Perlstein bio/acc (@eperlste) 's Twitter Profile Photo

A little girl in Hong Kong with the rare genetic disease PIGN-CDG has been seizure-free for a year while taking ascorbyl palmitate aka fat-soluble Vitamin C. Still blows my mind everytime I hear case reports like this, especially because we went straight from a yeast hit in the

Effie Parks (@onceuponagene) 's Twitter Profile Photo

Do you love the movie - Hackers? Of course you do. Maybe you'll enjoy this story too. "She Found the Backdoor - One Mom’s Hack on Genetic Diagnosis w/ Julia Taravella" I met Julia Taravella in a Seattle coffee shop in 2022, after she messaged me while she was in town from

Do you love the movie - Hackers? 
Of course you do. 
Maybe you'll enjoy this story too.

"She Found the Backdoor - One Mom’s Hack on Genetic Diagnosis w/ Julia Taravella" 

I met Julia Taravella in a Seattle coffee shop in 2022, after she messaged me while she was in town from