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Global Healthy Living Foundation Showcases Patient-Centered Digital Innovations for Rheumatic and Musculoskeletal Diseases at European Arthritis Conference

Global Healthy Living Foundation Showcases Patient-Centered Digital Innovations for Rheumatic and Musculoskeletal Diseases at European Arthritis Conference

Business Wire5 days ago

UPPER NYACK, N.Y.--(BUSINESS WIRE)--The Global Healthy Living Foundation (GHLF), a leader in patient-centered research and education, is proud to announce its participation in the European Congress of Rheumatology (EULAR) 2025 in Barcelona June 11-14. GHLF will present two abstracts highlighting innovative digital solutions designed to address suboptimal treatment and enhance disease management by strengthening doctor–patient communication and equipping individuals living with rheumatic and musculoskeletal conditions.
'We're proud to bring forward research that leverages digital health solutions by embedding the patient voice from the start.'
Empowering Patients with Knee Osteoarthritis Through OA Compass
In the abstract titled "OA Compass: An Online Decision-Making Tool Empowering Patients with Knee Osteoarthritis Through Stories, Treatment Guidance, and Personalized Support" (Abstract #153, PARE Track), GHLF introduces OA Compass—a free, online, interactive resource designed to help patients with knee osteoarthritis (OA) better understand and manage their condition can be found at https://ghlf.org/compass-koa-page/. 'We heard time and again from patients that they felt overwhelmed and isolated when trying to make treatment decisions,' said Shelley Fritz, Patient-Centered Engagement and Insights Manager at GHLF. 'OA Compass was built to meet people where they are—offering support, education, and validation in a way that truly feels human.'
Developed through interviews with patients and orthopedic surgeons, OA Compass features real-life patient video stories, treatment information, and customizable guides to support shared decision-making with healthcare providers. Since its launch, the tool has reached nearly 2,000 users, generated over 900 hours of video engagement, and demonstrated its value in improving patient confidence and disease self-management.
Real-Time Integration of Patient-Reported Insights in Rheumatic Disease Care
A second abstract, "Implementing a Digital Platform for Real-Time Collection and Integration of Patient-Reported Insights in Rheumatic Disease Management" (Abstract #2835, Clinical Research Track), highlights a novel digital tool developed by GHLF to elevate the patient voice in routine rheumatology care.
The tool—a brief, 2-minute digital questionnaire available at https://ghlf.org/rheumassessment/ —was developed with direct input from both patients and clinicians. It captures real-time insights across conditions such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and non-radiographic axial spondyloarthritis. 'Many patients struggle to communicate residual symptoms or are unsure how to raise concerns during medical appointments, often resulting in settling for suboptimal disease management. By encouraging open dialogue, the tool empowers patients to voice their experiences and needs and also guides them on how to communicate better with their healthcare team,' says David Curtis, Chief Technology Officer at GHLF who led the design and development of the platform, building a streamlined, user-friendly interface that leverages real-time data to enhance patient engagement and clinical communication. Among the 2,192 patients who completed the tool, nearly 89% said they would share their results with their healthcare provider—highlighting its value in enhancing shared decision-making and surfacing hidden barriers to effective care.
Innovating With, Not Just For, Patients
'These projects reflect our unwavering commitment to developing tools that meet patients where they are,' said Shilpa Venkatachalam, PhD, MPH, Chief, Patient-Centered Research Operations and Ethical Oversight Officer at GHLF. 'We're proud to bring forward research that not only leverages digital health solutions but does so by embedding the patient voice from the start.'
GHLF's work continues to advance global conversations on integrating lived experience into rheumatology research, care delivery, and policy. Both abstracts highlight the role of accessible technology in enhancing patient-provider communication and improving quality of life for people living with chronic musculoskeletal conditions.
For more information about GHLF's research or to explore the OA Compass and RheumAssessment tools, visit www.ghlf.org.
About GHLF
The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities which draw more than 700,000 patients a month to GHLF websites and create more than 10 million impressions a month on seven social media platforms. In 2024, GHLF had more than 1 million views and listens with its patient-centered audio-visual content, found on YouTube and podcast platforms. GHLF never asks the public for donations, receiving funding instead through governments, non-governmental organizations, foundations, industry, family foundations, and GHLF Co-Founder Louis Tharp. Visit www.ghlf.org for more information.

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Where approved, epcoritamab is available as a readily accessible therapy without the need for reducing tumor burden ('debulking'). Epcoritamab is being co-developed by Genmab and AbbVie as part of the companies' oncology collaboration. The companies will share commercial responsibilities in the U.S. and Japan, with AbbVie responsible for further global commercialization. Both companies will pursue additional international regulatory approvals for the investigational R/R FL indication and additional approvals for the R/R DLBCL indication. Genmab and AbbVie continue to evaluate the use of epcoritamab as a monotherapy, and in combination, across lines of therapy in a range of hematologic malignancies. This includes five ongoing Phase 3, open-label, randomized trials including a trial evaluating epcoritamab as a monotherapy in patients with R/R DLBCL compared to investigators choice chemotherapy (NCT04628494), a trial evaluating epcoritamab in combination with R-CHOP in adult patients with newly diagnosed DLBCL (NCT05578976), a trial evaluating epcoritamab in combination with rituximab and lenalidomide (R2) in patients with R/R FL (NCT05409066), a trial evaluating epcoritamab in combination with rituximab and lenalidomide (R2) compared to chemoimmunotherapy in patients with previously untreated FL (NCT06191744), and a trial evaluating epcoritamab in combination with R2 compared to chemotherapy infusion in patients with R/R DLBCL (NCT06508658). The safety and efficacy of epcoritamab has not been established for these investigational uses. Please visit for more information. EPKINLY ® (epcoritamab-bysp) U.S. INDICATIONS & IMPORTANT SAFETY INFORMATION What is EPKINLY? EPKINLY is a prescription medicine used to treat adults with certain types of diffuse large B-cell lymphoma (DLBCL), high-grade B-cell lymphoma, or follicular lymphoma (FL) that has come back or that did not respond to previous treatment after receiving 2 or more treatments. EPKINLY is approved based on patient response data. Studies are ongoing to confirm the clinical benefit of EPKINLY. It is not known if EPKINLY is safe and effective in children. Important Warnings—EPKINLY can cause serious side effects, including: Cytokine release syndrome (CRS), which is common during treatment with EPKINLY and can be serious or life-threatening. To help reduce your risk of CRS, you will receive EPKINLY on a step-up dosing schedule (when you receive 2 or 3 smaller step-up doses of EPKINLY before your first full dose during your first cycle of treatment), and you may also receive other medicines before and for 3 days after receiving EPKINLY. If your dose of EPKINLY is delayed for any reason, you may need to repeat the step-up dosing schedule. Neurologic problems that can be life-threatening and lead to death. Neurologic problems may happen days or weeks after you receive EPKINLY. People with DLBCL or high-grade B-cell lymphoma should be hospitalized for 24 hours after receiving their first full dose of EPKINLY on day 15 of cycle 1 due to the risk of CRS and neurologic problems. Tell your healthcare provider or get medical help right away if you develop a fever of 100.4°F (38°C) or higher; dizziness or lightheadedness; trouble breathing; chills; fast heartbeat; feeling anxious; headache; confusion; shaking (tremors); problems with balance and movement, such as trouble walking; trouble speaking or writing; confusion and disorientation; drowsiness, tiredness or lack of energy; muscle weakness; seizures; or memory loss. These may be symptoms of CRS or neurologic problems. If you have any symptoms that impair consciousness, do not drive or use heavy machinery or do other dangerous activities until your symptoms go away. EPKINLY can cause other serious side effects, including: Infections that may lead to death. Your healthcare provider will check you for signs and symptoms of infection before and during treatment and treat you as needed if you develop an infection. You should receive medicines from your healthcare provider before you start treatment to help prevent infection. Tell your healthcare provider right away if you develop any symptoms of infection during treatment, including fever of 100.4°F (38°C) or higher, cough, chest pain, tiredness, shortness of breath, painful rash, sore throat, pain during urination, or feeling weak or generally unwell. Low blood cell counts, which can be serious or severe. Your healthcare provider will check your blood cell counts during treatment. EPKINLY may cause low blood cell counts, including low white blood cells (neutropenia), which can increase your risk for infection; low red blood cells (anemia), which can cause tiredness and shortness of breath; and low platelets (thrombocytopenia), which can cause bruising or bleeding problems. Your healthcare provider will monitor you for symptoms of CRS, neurologic problems, infections, and low blood cell counts during treatment with EPKINLY. Your healthcare provider may temporarily stop or completely stop treatment with EPKINLY if you develop certain side effects. Before you receive EPKINLY, tell your healthcare provider about all your medical conditions, including if you have an infection, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. If you receive EPKINLY while pregnant, it may harm your unborn baby. If you are a female who can become pregnant, your healthcare provider should do a pregnancy test before you start treatment with EPKINLY and you should use effective birth control (contraception) during treatment and for 4 months after your last dose of EPKINLY. Tell your healthcare provider if you become pregnant or think that you may be pregnant during treatment with EPKINLY. Do not breastfeed during treatment with EPKINLY and for 4 months after your last dose of EPKINLY. In DLBCL or high-grade B-cell lymphoma, the most common side effects of EPKINLY include CRS, tiredness, muscle and bone pain, injection site reactions, fever, stomach-area (abdominal) pain, nausea, and diarrhea. The most common severe abnormal laboratory test results include decreased white blood cells, decreased red blood cells, and decreased platelets. In follicular lymphoma the most common side effects of EPKINLY include injection site reactions, CRS, COVID-19, tiredness, upper respiratory tract infections, muscle and bone pain, rash, diarrhea, fever, cough, and headache. The most common severe abnormal laboratory test results include decreased white blood cells and decreased red blood cells. These are not all of the possible side effects of EPKINLY. Call your doctor for medical advice about side effects. You are encouraged to report side effects to the FDA at (800) FDA-1088 or or to Genmab US, Inc. at 1-855-4GENMAB (1-855-443-6622). Please see Full Prescribing Information and Medication Guide, including Important Warnings. Globally, prescribing information varies; refer to the individual country product label for complete information. About Genmab Genmab is an international biotechnology company with a core purpose of guiding its unstoppable team to strive toward improving the lives of patients with innovative and differentiated antibody therapeutics. For 25 years, its passionate, innovative and collaborative team has invented next-generation antibody technology platforms and leveraged translational, quantitative and data sciences, resulting in a proprietary pipeline including bispecific T-cell engagers, antibody-drug conjugates, next-generation immune checkpoint modulators and effector function-enhanced antibodies. By 2030, Genmab's vision is to transform the lives of people with cancer and other serious diseases with knock-your-socks-off (KYSO ®) antibody medicines. Established in 1999, Genmab is headquartered in Copenhagen, Denmark, with international presence across North America, Europe and Asia Pacific. For more information, please visit and follow us on LinkedIn and X. This Media Release contains forward looking statements. The words 'believe,' 'expect,' 'anticipate,' 'intend' and 'plan' and similar expressions identify forward looking statements. Actual results or performance may differ materially from any future results or performance expressed or implied by such statements. The important factors that could cause our actual results or performance to differ materially include, among others, risks associated with preclinical and clinical development of products, uncertainties related to the outcome and conduct of clinical trials including unforeseen safety issues, uncertainties related to product manufacturing, the lack of market acceptance of our products, our inability to manage growth, the competitive environment in relation to our business area and markets, our inability to attract and retain suitably qualified personnel, the unenforceability or lack of protection of our patents and proprietary rights, our relationships with affiliated entities, changes and developments in technology which may render our products or technologies obsolete, and other factors. For a further discussion of these risks, please refer to the risk management sections in Genmab's most recent financial reports, which are available on and the risk factors included in Genmab's most recent Annual Report on Form 20-F and other filings with the U.S. Securities and Exchange Commission (SEC), which are available at Genmab does not undertake any obligation to update or revise forward looking statements in this Media Release nor to confirm such statements to reflect subsequent events or circumstances after the date made or in relation to actual results, unless required by law. Genmab A/S and/or its subsidiaries own the following trademarks: Genmab ®; the Y-shaped Genmab logo ®; Genmab in combination with the Y-shaped Genmab logo ®; HuMax ®; DuoBody ®; HexaBody ®; DuoHexaBody ®, HexElect ® and KYSO™. EPCORE ®, EPKINLY ®, TEPKINLY ® and their designs are trademarks of AbbVie Biotechnology Ltd. i Engelberts PJ, et al. DuoBody-CD3xCD20 Induces Potent T-Cell-Mediated Killing of Malignant B Cells in Preclinical Models and Provides Opportunities for Subcutaneous Dosing. EBioMedicine

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