
Listening to the Quiet Signs: A Twelve-Year Journey to Answers
Patient Worthy Contributor - May 5, 2026LISTEN TO OUR PODCAST
THE LATEST FROM PATIENT WORTHY
FEATURED
UPCOMING EVENTS
SIGN UP FOR OUR NEWSLETTER
Breathing is something many of us take for granted- until it isn't. On World Asthma Day, we shine a light on a condition that affects millions worldwide, reminding us that asthma is more than occasional shortness of breath- it's a chronic condition that requires awareness, proper management, and access to care. With the right treatment plan, education, and support, people living with asthma can lead full, active lives. Today is about recognizing triggers, understanding symptoms, and advocating for cleaner air and equitable healthcare so everyone can breathe a little easier.
#WorldAsthmaDay #BreatheEasy #PatientWorthy
... See MoreSee Less

- likes 0
- Shares: 0
- Comments: 0
@CureSyngap1🎤 💻 New #CURESYNGAP1 Webinar with Joseph D. Buxbaum, PhD
🧬 Three SYNGAP1 studies at the Seaver Autism Center at Mount Sinai
🗓️ Thursday, May 14
🕘 9:30 AM PT 🕔 12:30 PM ET
👉 cureSYNGAP1.org/Seaver
Follow our LinkedIn Account to stay up to date with CURE SYNGAP1!
#SYNGAP1 #RareDiseaseResearch #SynGAP #CareAboutRare #PatientAdvocacy #Neurology #Genetics #Pediatrics #epilepsy #autism #GeneticCounseling #RareDisease
... See MoreSee Less

#HunterSyndrome Project AliveThese are the Faces of MPS II 💜
Each child you see here is more than a condition. MPS II (Hunter syndrome) may be rare, but these faces remind us why awareness matters. Why research matters. Why access to treatment matters. We share their stories to honor them, to celebrate them, and to keep pushing for a future where every child has access to the care they deserve.
#MPSII #HunterSyndrome #RareDiseaseAwareness #MPSAwareness #ProjectAlive #StrongerTogether
... See MoreSee Less



