heidi bjornson

Rare Disease Advocate, #PCD, #RareAsOne Program Manager, @CZIScience, Attorney, Mom

[Chan Zuckerberg Initiative @ChanZuckerberg]

“Together, we can make a difference.” 💪 Stefania Dantone, founder of SCN2A Italia.

In partnership with SCN2A Germany, SCN2A Italia is creating an EU SCN2A Foundation to connect families + speed the search for effective treatments 🤝 https://t.co/Rz0xNtuexK

[heidi bjornson @heidibp]

We are thrilled to welcome 31 new patient-led organizations into the #RareAsOne Network - a community of now nearly 100 organizations learning from one another across disease areas, centering the voices of #patients, and driving progress in #RareDisease research.

[biohub @biohub]

We’re excited to announce that 31 new patient-led rare disease organizations are joining our #RareAsOne Network. We look forward to connecting, collaborating + driving progress together.

Meet the grantees & learn more about our #RareDisease funding https://t.co/gUheBKh5Qz

[heidi bjornson @heidibp]

We are thrilled to welcome 31 new patient-led organizations into the #RareAsOne Network - a global community of now nearly 100 organizations learning from one another across disease areas, centering the voices of #patients and driving forward progress in #RareDisease research.

[biohub @biohub]

We’re excited to announce that 31 new patient-led rare disease organizations are joining our #RareAsOne Network. We look forward to connecting, collaborating + driving progress together.

Meet the grantees & learn more about our #RareDisease funding https://t.co/gUheBKh5Qz

[Myrona Goutaki @mgoutaki]

Another excellent session on global initiatives on PCD at the #otm2024 Dr Machogu discusses barriers for PCD diagnosis and setting up a centre in Kenya

[James D Chalmers @ProfJDChalmers]

Amazing keynote talk from @Mill_lab on new therapies for primary ciliary dyskinesia
The dream of editing the genome to prevent lifelong disease is inspiring!

PCD on the move #otm2024 Puerto Rico

[BEAT-PCD (ERS CRC) @beatpcd]

Our own @Shoemelia and @mathieu_bottier leading the hands-on session on HSVM at the #OTM2024 @PCDFoundation

[heidi bjornson @heidibp]

@Mill_lab @PCDFoundation I am so sad not to be there! Sending all wishes for an amazing conference. Such incredible progress!!!! @PCDFoundation #PCD
#cilia #therapies #cures

[Chan Zuckerberg Initiative @ChanZuckerberg]

Patient advocates: here's your call to action!

New @CZIScience funding opportunity for patient-led #RareDisease organizations dedicated to advancing research. Apply to be part of the #RareAsOne Network: https://t.co/lq0dg9I2R8

[heidi bjornson @heidibp]

@Linseigh @cziscience :)

[heidi bjornson @heidibp]

#Patient organizations are driving forward rapid progress in #RareDisease #research. We are thrilled @czi to announce the 3rd Cycle of the #RareAsOne Network, open to patient organizations around the world working in #channelopathies #ciliopathies and inborn errors of #metabolism

[Chan Zuckerberg Initiative @ChanZuckerberg]

Are you a patient advocate for a #RareDisease?

#RareAsOne is uniting patient communities working to accelerate rare disease research. Your organization could be a part of this change—learn more about our new funding opportunity ➡️ https://t.co/lq0dg9I2R8

[heidi bjornson @heidibp]

Thrilled to announce the launch of a third cycle of the #RareAsOne Network - supporting #RareDisease patient organizations around the world driving forward #research in #channelopathies #ciliopathies and inborn errors of #metabolism. Applications due Feb 22!

[biohub @biohub]

Unlock new opportunities in rare disease research.

New #RareAsOne RFA will support patient-led organizations driving research in channelopathies, ciliopathies or inborn errors of metabolism.

Apply now! https://t.co/pauTG85R7K

[PCD Foundation @PCDFoundation]

Register: Upcoming ReCode Therapeutics Webinars for primary ciliary dyskinesia patients & families. Click the link for more information. #mRNA #genes #primaryciliarydyskinesia #PCD -https://t.co/xBPdrXqGwG

[Joe Biden @JoeBiden]

We must, without equivocation, denounce antisemitism.

We must also, without equivocation, denounce Islamophobia.

To all of you hurting, I want you to know: I see you. You belong.

[Stanford University @Stanford]

Virtual reality lessons offer a reassuring sense of routine and unlimited field trips for @StanfordChild patients too sick to learn in person. https://t.co/Maajohvrcl

[heidi bjornson @heidibp]

Excited for the #NORDSummit and the chance to talk about how #patient organizations are building communities, developing #research-enabling infrastructure, and driving forward progress in #RareDiseases! Hope to see you there!

[Amjad Horani @horaniLab]

Experimenting with newer ways to image multiciliated cells @WUSTLmed. These are amazing images of cultured human tracheal cells produced by Wang Twan, a talented postdoc in the horanilab, part of the amazing WASHU cilia group.

[James D Chalmers @ProfJDChalmers]

Very excited to share our latest paper from @EMBARCnetwork - Inflammatory molecular endotypes in bronchiectasis . Led by the brilliant @hayoungcc @ATSBlueEditor
Patients can be clustered by neutrophilic and T2 inflammation and this predicts exacerbations
https://t.co/5g6SGIZVcf

[heidi bjornson @heidibp]

@cziscience @noc_film So inspired by this incredible community!!!!

[biohub @biohub]

@noc_film Thanks to everyone who joined us for our 2023 #ScienceInSocietyMtg! It was a great opportunity to gather + hear from patient leaders, researchers & clinicians & other stakeholders about their incredible work toward finding treatments + cures for #RareDisease

[heidi bjornson @heidibp]

@LeahEDSCN2A @RareDiseases @ShawnEgan14 Can't wait!