Connie Sessa

[n-Lorem Foundation @n_lorem]

Don’t walk... run to check out the 2026 Nano-rare Patient Colloquium agenda! 🏃‍♀️💨
https://t.co/6aTMTAzgmu

[Connie Sessa @concettaeedy]

https://t.co/lcZ17fFe2N “A majority also reported observing differential treatment of patients based on vaccination status (56.6%).”

[n-Lorem Foundation @n_lorem]

Biogen is a leading biotech company that pioneers innovative science to deliver new medicines to transform patients’ lives and to create value for shareholders and our communities.

Thank you, @biogen, for once again hosting this year's Nano-rare Patient Colloquium!

[n-Lorem Foundation @n_lorem]

100+ registrations in under 24 hrs! 🚨

The excitement for the 2026 NRPC is already building. Join us Oct. 7-8 for two days of powerful conversations, community, and collaboration focused on nano-rare disease.

Register now: https://t.co/6aTMTAzgmu

[Mila's Miracle @stopbatten]

Three years ago, I decided to bet on the UK as the place that would demonstrate a new system for accessing individualized medicines at scale.

[n-Lorem Foundation @n_lorem]

Today we recognize the individuals, families, researchers, and advocates working to raise awareness and advance research for the KIF1A community.

#KIF1A #RareDiseaseAwareness #RareDisease

[n-Lorem Foundation @n_lorem]

TOMORROW! Join us for a joint webinar with @idtdna Principal Scientist Kim Lennox, MSc, and n-Lorem’s Assistant Director of ASO Strategy Research, Anthony Vu, PhD, as they explore antisense oligonucleotides (ASOs).

How to join:
Register here: https://t.co/sn5VTsIw26

[n-Lorem Foundation @n_lorem]

Grateful for partners who show up in every way. 🧡

Thank you to Charles River for hosting a special visit with one of our patient families and a meaningful panel discussion with the Kosla family, n-Lorem, and your team. Your continued support helps make this work possible.

[n-Lorem Foundation @n_lorem]

Join us for a joint webinar with IDT’s Principal Scientist Kim Lennox, MSc, and n-Lorem’s Assistant Director of ASO Strategy Research, Anthony Vu, PhD who explore ASOs in personalized medicine.

Register here: https://t.co/sn5VTsIw26

[Elon Musk @elonmusk]

The vaccine dosage was obviously too high and done too many times.

I had the original Wuhan virus before there was any vaccine and it was much like any other cold/flu. Bad, but not terrible.

But my second vaccine shot almost sent me to the hospital. Felt like I was dying.

[CTV News @CTVNews]

Federal government taking over vaccine injury compensation, aims to address backlog https://t.co/iuBv8yMQJy

[n-Lorem Foundation @n_lorem]

Part two of our series that pulls back the curtain on the scientific breakthroughs that make n-Lorem possible is out now. We call them miracles and without them, n-Lorem would not exist today.

Today’s miracle: Induced Pluripotent Stem Cells

Stream here: https://t.co/ET160KHb7Q

[n-Lorem Foundation @n_lorem]

Now streaming on CNBC Cures: Defying Rare Disease—see the stories and breakthroughs bringing hope to millions.

https://t.co/dQqfKPQ7lN

[n-Lorem Foundation @n_lorem]

Defying Rare Disease premieres tonight on CNBC at 7 PM ET which follows families navigating rare diseases alongside the scientists, advocates, and innovators working that features familiar faces, including KIF1A patient Susannah and n-Lorem founder Dr. Stan Crooke!

[n-Lorem Foundation @n_lorem]

It’s #RareDiseaseDay and the path forward is brighter when we walk it together.

Patient families, physicians, our team, friends, and loved ones came together to Chalk the Path Forward, filling our office sidewalk with messages of hope and awareness.

https://t.co/sFPLVRCb1B

[Connie Sessa @concettaeedy]

@grok @lm1982tx @libsoftiktok Do we know what the prevalence of autism is if we exclude “associated with a known genetic condition”?

[Connie Sessa @concettaeedy]

@grok @lm1982tx @libsoftiktok But what if “social communication deficits + restricted/repetitive behaviors” are actually part of the newly discovered genetic disorders phenotype?

[Connie Sessa @concettaeedy]

@grok @lm1982tx @libsoftiktok Thank you - if some cases of autism turn out to be genetic/inherited conditions newly discovered do they lose their autism diagnosis and do the numbers/prevalence get updated?

[Connie Sessa @concettaeedy]

@grok @lm1982tx @libsoftiktok Thank you - what other childhood diseases are similar with rates of 1 in 28?