Rare Disease
The Value of Living with Tremendous Challenges
If you got past the title without rolling your eyes or getting angry (I understand if you did either or both as you will see
Datroway Receives U.S. Priority Review for First‑Line Treatment of Metastatic Triple‑Negative Breast Cancer
- February 27, 2026
More Than a Diagnosis: Gabriela’s Journey With Lysinuric Protein Intolerance, Urea Cycle Disorder, and Unshakable Faith
Dual Approach to Disease: Eli Lilly’s Zepbound-Taltz Combination Demonstrates Breakthrough Results in Psoriasis Treatment
My Journey with Limb-Girdle Muscular Dystrophy (LGMDR1)
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Pain Management
A Cellular Solution to America’s Opioid Crisis: Biotech Advances Alternative to Chronic Pain Management
Breaking the Cycle of Prescription Dependency The opioid epidemic that has devastated American communities for decades may finally have a novel challenger. According to Bezinga.com,
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🦓From Capitol Hill to NIH, Patient Worthy had a wonderfully wild whirlwind of a time at Rare Disease Week in DC! 🦓
Our last day was spent chock full making amazing connections with other committed orgs including Gabriella Miller Kids First Data Resource Center, National Organization for Rare Disorders, Inc. (NORD), Start Genetic, The Myositis Association, Stephanie Roirdan EveryLife Foundation for Rare Diseases, CureID, & International Myositis Health & Research Collaboration Alliance.
‼️Stay tuned next week as we highlight several WARRIOR patients and caregivers who shared their Rare Disease Week testimonies with us LIVE AND IN PERSON! With our deepest heartfelt gratitude, we want to thank everyone who took the time to share their stories with us! The moments spent with you were more meaningful and impactful than you will ever know. Thank you for making our time at #RareDC2026 a memorable one ❤️ See you in 2027!
#PatientWorthy
During Rare Disease Month, Patient Worthy is honored to share Betrice's journey.
Betrice Coleman-Sweet is a dynamic communications strategist, professional writer, and certified executive coach dedicated to amplifying the impact of individuals, organizations, and companies committed to serving their communities. As the Founder of Serving Angels Media, LLC, she helps clients amplify their visibility and mission through strategic storytelling and brand development.
In 2023, Betrice was diagnosed with Alpha-1, a pivotal moment that galvanized her into action. She has since become a passionate advocate for Alpha-1 Antitrypsin Awareness and visibility in communities of color. Betrice is honored to be a part of the esteemed Fred G. Walsh Speakers Bureau, a vital program of the Alpha-1 Foundation.
Leveraging her background as an International Coaching Federation (ICF) Associate Certified Coach (ACC) and a leader with Toastmasters International, she empowers people to embrace their stories as a powerful tool for connection, leadership, and social change within the Alpha-1 community and beyond.
#rarediseasemonth #raredisease #rarebutnotalone #WeCareAboutRare #SHAREYOURSTRIPES #shareyourstory #PatientWorthy
#FactFriday: Multifocal motor neuropathy is rare, often misunderstood, but highly treatable when properly diagnosed. Swipe to learn more! #mmn #multifocalmotorneuropathy #PatientWorthy
Share your MMN journey with us here: bit.ly/4dV7gru
