A quote on a blue textured background reads, "I have to remind myself every day that I have no control over what my body does. I’ve been here before, and I’m positive I’ll be here again. It wasn’t worth the tears this time." Below, there is a circular photo of a person with glasses and a smile. The name "Kristy Coleman" and the title "ITP Contributor" are included.

In her latest patient perspective column, Kristy Coleman opens up about navigating the emotional highs and lows of living with immune thrombocytopenia (#ITP).

Read Kristy's full column 🖊️: https://bit.ly/41n7a6v

#RareDisease #RareVoices #PatientPerspectives #MedSky

💙 February is Rare Disease Month — a time to come together, raise awareness, and amplify the voices of those living with rare conditions.

#RareDiseaseMonth #RareDiseaseDay #Bionews #RareVoices #RareCommunity

💙 February is Rare Disease Month — a time to come together, raise awareness, and amplify the voices of those living with rare conditions.

#RareDiseaseMonth #RareDiseaseDay #Bionews #RareVoices #RareCommunity

Stay tuned for this video series—we’re excited to share powerful insights and perspectives from individuals living with rare diseases. 💙 #RareDiseaseDay #Bionews #RareVoices #RareButReal

🧡 Patient Perspectives That Shaped 2025: Part 1

Throughout 2025, patients and caregivers shared lived experiences—offering insight, honesty, and connection across the rare disease community.

Catch up on patient stories reflecting diagnosis, care, resilience, and advocacy.

#RareDisease #RareVoices

🧠 Patience takes practice

Bruce Campbell, Pompe contributor, shares how living with #PompeDisease has taught him to actively listen to his body and to respect its limits.

Read Bruce's story ➡️: https://bit.ly/4j22n2m

#RareDisease #PatientPerspective #RareVoices #PompeStrong

💙 The compassion of medical students matters.

#CIDP Contributor Jaimie Sheil shares how medical students' compassion shaped her rare disease journey — proving empathy is as vital as expertise.

Read Jaimie’s full article: https://bit.ly/3XSPy0G

#RareDisease #RareVoices #PatientPerspective #MedSky

💓 What “romanticizing” your life looks like with a rare disease…

#PompeDisease contributor Keyana Sullivan shares how she finds beauty in small moments while navigating daily challenges.

📖 Read more from Keyana: https://bit.ly/48DAWqY

#RareDisease #RareVoices #PompeStrong

😮‍💨 How an #AATD nightmare became a valuable lesson…

AATD contributor Alyssa Gloor shares a recent scare: managing a cold and her rare lung disease—while realizing her inhaler hadn’t been refilled.

Read Alyssa's story here: https://bit.ly/3MybtaW

#RareDisease #RareVoices #PatientPerspective

🎡 Another round on the ferris wheel of medication…

#HAE contributor Donna Maxwell opens up about her 23-year journey of trying treatment after treatment in hopes of finding relief.

👉 Read Donna's full story: https://bit.ly/3Y2zmdg

#RareDisease #HereditaryAngioedema #RareVoices

A complicated relationship with "care"... 💙

Jaimie Sheil, CIDP Contributor, shares how living with a rare disease changed her understanding of the word.

✨ Read Jaimie’s full story: https://bit.ly/4pwCpGb

#RareDisease #CIDP #RareVoices

Happy HallowThankMas! 🎃 🦃 🎄

ATTR-CM Contributor Faye Adams is celebrating the season a little differently this year — by creating moments whenever she can, not just when the calendar says it’s time.

✨Read more here: https://bit.ly/47ZFb10

#RareDisease #ATTRCM #RareVoices #MedSky

❄️ Cold weather isn’t a winter wonderland for everyone. For FA Contributor Lauren Gaczhias, it means extra challenges and big adjustments to her daily routine.

Read Lauren’s full column: https://bit.ly/4ofFppm

#RareDisease #RareVoices #FriedreichAtaxia #PatientVoices

💭 Alithea Athans, CAD Contributor, reflects on the emotional journey of living with a rare disease — and what it means to grieve your past self.

Read more ➡️ https://bit.ly/47WriPI

#ColdAgglutininDisease #CAD #RareDisease #RareVoices

Kristy Coleman, ITP Contributor, had never experienced an illness that required so many medical professionals to approve a single medication—until she was diagnosed with immune thrombocytopenia (#ITP), a rare disease.

Read more: https://bit.ly/43rC7Ib

#RareDisease #RareVoices #RareSky

Absolutely — centring the person and building research with the community is key. Thank you for being part of the day and for championing this message! #RareVoices