Rare Should Not Mean Invisible July 7, 2025 Rare diseases are costing us more than we think. 📊 30 million Americans live with a rare disease.⏳ It takes an average of 6 years and 17 medical encounters for diagnosis.💸 And the cost? Over $1 trillion annually in the U.S. alone—just from 379 out of 10,000+ […]
Rare Should Not Mean Invisible Read More »
Graves’ Disease Awareness Month July 3, 2025 Spotlight on Kade’s Courage 💙🦋This July, Clinakos Inc. is proud to honor Graves’ Disease Awareness Month by sharing Kade’s inspiring journey—a reminder that every child’s health story matters and that early action can change lives. Kade’s Story: Turning Uncertainty into AnswersAt just 4½, Kade’s endless energy and love
Graves’ Disease Awareness Month Read More »
National Institutes of Health (NIH) announced a new funding opportunity for the Rare Diseases Clinical Research Consortia (RDCRC) July 1, 2025 🗓️In May 2025, the National Institutes of Health (NIH) announced a new funding opportunity for the Rare Diseases Clinical Research Consortia (RDCRC), emphasizing collaborative, multi-site, and patient-centric non-interventional research. Read the news link below🔗
Cancer Immunotherapy Month July 15, 2025 🎗️June is Cancer immunotherapy month, and Clinakos Inc. nothing excites us more than getting to know about new breakthrough therapies and innovations in Oncology and Precision Medicine! ✨ In a recent study (April 2025), researchers have unveiled EchoBack-CAR T-cells—next-gen, ultrasound-controlled immune cells with game-changing benefits: 🔹 5x longer attack
Cancer Immunotherapy Month Read More »
Myasthenia Gravis Awareness Month June 18, 2025 🌟 June is Myasthenia Gravis Awareness Month! 🌟 Did you know that patients with seronegative myasthenia gravis (snMG) face unique and often greater challenges than those with other forms of MG? 🔍 An April 2025 research study shows:• snMG patients experience longer diagnostic delays and earlier symptom onset•
Myasthenia Gravis Awareness Month Read More »
RWE’s Growing Role in Rare Disease Innovation July 15, 2025 🎯 Spotlight on Progress: We’re thrilled to see how real-world evidence (RWE) is transforming the landscape of drug and biologic approvals in rare diseases. According to a recent article from the American Society for Clinical Pharmacology & Therapeutics (ASCPT), between fiscal years 2020 and 2022,
RWE’s Growing Role in Rare Disease Innovation Read More »
Alzheimer’s & Brain Awareness Month July 15, 2025 🧠 Alzheimer’s & Brain Awareness Month: Jeff’s Story—Redefining What’s Possible At Clinakos Inc., we know that behind every diagnosis is a person with dreams, grit, and a story worth telling. This Alzheimer’s & Brain Awareness Month, we’re honoring those stories—starting with Jeff Borghoff’s. When Life Hits Pause—And
Alzheimer’s & Brain Awareness Month Read More »
Noteworthy update for the world of rare disease innovation July 15, 2025 🚀 Noteworthy update for the world of rare disease innovation! The FDA’s head of CBER, Vinay Prasad, stated at the recent National Organization for Rare Disorders conference that the agency is committed to making rare disease drugs available at the very first sign
Noteworthy update for the world of rare disease innovation Read More »
Batten Disease Awareness Day June 9, 2025 Batten Disease Awareness Day: Shining a Light, Sharing a Story 🌟🧡 June 9 is not just another date on the calendar—it’s International Batten Disease Awareness Day, a day when families, advocates, and organizations around the globe unite to shine a light on one of the world’s rarest and
Batten Disease Awareness Day Read More »
Turning Cancer Data Chaos into Actionable Insights July 15, 2025 🚨 Data Silos in Cancer Care undermine advances in research and treatment. Nearly 90% of healthcare data exists in unstructured formats. In oncology, crucial patient data is scattered across hospitals, labs, EHRs, and even wearables-making it tough for researchers and clinicians to get the full
Turning Cancer Data Chaos into Actionable Insights Read More »
