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care-beyondlimits.bsky.social
💡 Did you know?

Microcephaly can be mild or severe — and not every child experiences it the same way.
That’s why personalized care matters.
We advocate for early screening, therapy, and parental support in Africa.
#MicrocephalyFacts #CareBeyondLimits #RareDiseasesinAfrica
#Rarediseaseadvocate
November 12, 2025 at 9:57 AM
angioedemanews.bsky.social
#HAE #HereditaryAngioedema #HaeAwareness #RareDisease #RareDiseaseAdvocate #ChronicIllness #CaregiverJourney #Autoimmune #HaeCommunity #PatientAdvocacy #InvisibleIllness #RareButStrong #BioNews #AngioedemaNews
October 16, 2025 at 2:03 PM
angioedemanews.bsky.social
#Bionews #RareDiseaseCommunity #RareDiseaseAdvocate #DisabilityPrideMonth #RareDiseasePride #AngioedemaAdvocate #RareDiseaseAwareness #AngioedemaNews
July 24, 2025 at 2:02 PM
kuglerelisabeth.bsky.social
📚 Outside work, I’m a bookworm, trinket collector, and lover of art.

If you're working in life sciences, #rareDisease, or research visibility, let’s connect.

#WomenInSTEM #ScienceCommunication #RareDiseaseAdvocate #ScienceMedia #Zeeks #sayScleroderma #scleroderma #dermatomyositis #raynauds
3/3
July 21, 2025 at 10:27 AM
mgnews.bsky.social
Ever felt your body give out when you least expect it? 💔 #MyastheniaGravis #MGNews #MGWeakness #MuscleWeakness #RareDisease #RareDiseaseAdvocate #Bionews
May 21, 2025 at 3:30 PM
drkdhoffman.bsky.social
Not all #heroes wear capes, sometimes they wear SNEAKERS! Why this 79-year-old #physician is #running the #BostonMarathon #prostatecancersurvivor #rarediseaseadvocate www.chronicpainpartners.com/the-extra-mi...
The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com
Dr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.
www.chronicpainpartners.com
April 10, 2025 at 8:03 PM
kegottsleben.bsky.social
Writing letters to our #SouthDakota congressmen today! We have voice our concern! #DisabilityAdvocate #RareDiseaseAdvocate
February 2, 2025 at 5:47 PM
coloradobeek.bsky.social
Is there a Rare Disease Bsky? Tell your congresscritters to support several bills including H.R. 9774/S. 5194 extending enhanced ACA premium tax credits set to expire at the end of 2025. Plus all the ones for the kids! #CallYourRep #TakeAction #RareDiseaseAdvocate

rarediseases.org/driving-poli...
We urgently need your help in advocating for several rare disease bills which aim to increase access to quality health care and treatment for those living with rare diseases. We are asking Congress to include the following policy proposals in the year-end package: · The Creating Hope Reauthorization Act (H.R. 7384/S. 4583) reauthorizes the Rare Pediatric Disease Priority Review voucher program for at least five years, maintaining this vital incentive to support rare disease drug development for children in urgent need of treatment options. · The RARE Act (H.R. 7383/S. 1214) cements FDA's long-standing interpretation of how to properly award orphan drug exclusivity, a key drug development incentive established by the life-changing Orphan Drug Act. · The Accelerating Kids' Access to Care Act (H.R. 4758/S. 2372) seeks to address harmful barriers to out-of-state medical care for children with health coverage through Medicaid or the Children's Health Insurance Program (CHIP) by streamlining the provider enrollment process across state lines. · The Telehealth Modernization Act (H.R.7623/S. 3967) extends the Medicare telehealth flexibilities granted during the pandemic, which are set to expire at the end of this year. · The Innovation in Pediatric Drugs Act (H.R. 6664/S. 4509) updates how research is currently funded as part of the Best Pharmaceuticals for Children Act (BPCA) and strengthens FDA's ability to enforce post-market commitments to help close data gaps around pediatric uses for approved drugs. · The Health Care Affordability Act (H.R. 9774/S. 5194) extends availability of the enhanced ACA premium tax credits that are currently helping millions of Americans afford health insurance. They are are set to expire at the end of 2025. The deadline for Congress to wrap up its work is December 20!
December 10, 2024 at 4:40 PM