Rare Disease Advocate, #PCD, #RareAsOne Program Manager, @CZIScience, Attorney, Mom
San Francisco
Joined December 2009
- Tweets1.8K
- Following1.3K
- Followers706
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heidi bjornson retweeted
“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 🤝 czi.co/3XRJg0G
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.
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 czi.co/RAOcycle3
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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.
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 czi.co/RAOcycle3
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heidi bjornson retweeted
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
heidi bjornson retweeted
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
heidi bjornson retweeted
Our own @Shoemelia and @mathieu_bottier leading the hands-on session on HSVM at the #OTM2024 @PCDFoundation
heidi bjornson retweeted
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: czi.co/RareAsOneRFA
#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
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 ➡️ czi.co/RareAsOneRFA
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!
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! czi.co/RareAsOneRFA
heidi bjornson retweeted
Register: Upcoming ReCode Therapeutics Webinars for primary ciliary dyskinesia patients & families. Click the link for more information. #mRNA #genes #primaryciliarydyskinesia #PCD -mailchi.mp/pcdfoundation.org…
heidi bjornson retweeted
Virtual reality lessons offer a reassuring sense of routine and unlimited field trips for @StanfordChild patients too sick to learn in person. stanford.io/3OWnuVf
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!
heidi bjornson retweeted
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.
heidi bjornson retweeted
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
atsjournals.org/doi/epdf/10.…
heidi bjornson retweeted
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 retweeted
The BEAT-PCD project invites all people with PCD and parents/carers of children with PCD across the world to participate in this study to identify which PCD research areas are important to them and should be prioritised.
Find out more info here: pcdsupport.org.uk/uploads/do…
heidi bjornson retweeted
Sometimes life hits you hard and the only choice you have is to get back up tomorrow. When you do rise up with force.
Good night moon.
Agreed. The economic burden of disease has not begun to be counted, and is almost indescribable. Lives of those living with disease and those who care for them would be so much fuller, and our world so much richer,
if we would invest in #research for #treatments and #cures
The devastation a rare disease takes on one’s whole life is immeasurable. Advocates often take a harder knock as they typically give up a living wage to advocate for the entire community. #RareDiseaseTruth
And recognize and reward caregivers for the full time and heroic work @sabrevaya they do
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heidi bjornson retweeted
Agreed. The economic burden of disease has not begun to be counted, and is almost indescribable. Lives of those living with disease and those who care for them would be so much fuller, and our world so much richer,
if we would invest in #research for #treatments and #cures
The devastation a rare disease takes on one’s whole life is immeasurable. Advocates often take a harder knock as they typically give up a living wage to advocate for the entire community. #RareDiseaseTruth