How can online and digital platforms be used to support patients with rare diseases?
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Living with a rare disease can be challenging, isolating, and frustrating. You may struggle to find accurate information, adequate care, and emotional support. Fortunately, online and digital platforms can offer some solutions to help you cope and connect with others who share your condition. In this article, we will explore how you can use these tools to improve your quality of life and access resources that can make a difference.
One of the most valuable benefits of online and digital platforms is the opportunity to join online communities of patients, caregivers, and experts who have experience with your rare disease. These communities can provide you with peer support, advice, education, advocacy, and friendship. You can find online communities on various platforms, such as social media, forums, blogs, podcasts, and webinars. Some examples of online communities for rare diseases are RareConnect, Global Genes, and EURORDIS.
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Jayesh Ramani
National Business Head | P&L Management | Lean Six Sigma and Design Thinking in Healthcare | Transformational Leadership | Artificial Intelligence
Online and digital platforms can play a crucial role in supporting patients with rare diseases by providing information. 1) Information and Education: Online platforms can serve as valuable sources of information about rare diseases, their symptoms, diagnosis, and treatment options. 2) Telehealth and Telemedicine: Telehealth services enable patients with rare diseases to consult with specialists from around the world without the need to travel. 3) Remote Monitoring: Digital health tools and wearables can help individuals with rare diseases monitor their health and track symptoms. 4) Mobile Apps: Mobile apps can provide patients with rare diseases and their caregivers with tools to manage medications, symptoms, and appointments.
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Dr Ajay Vasant Rotte, MS , CARE CIIGMA HOSPITAL, MBBS PGDHHM DFID PGDCED MBA CPHQ PSC LSSGB Ph.D.
NABH ASSESSOR ,TOP HEALTHCARE MANAGEMENT VOICE,UNIVERSITY PROFESSOR
"CARE." 1. Connect and Community Building: Online platforms can connect patients with rare diseases, fostering a sense of community and shared experiences. 2. Access to Information: These platforms offer a wealth of information, empowering patients to better understand their condition and treatment options. 3. Remote Consultations: Digital tools enable remote consultations with specialized healthcare professionals, ensuring access to expert care. 4. Education and Awareness: Patients can access educational resources and raise awareness about their condition, reducing stigmatization. Online and digital platforms have the potential to provide invaluable support and resources for those with rare diseases,
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Another way that online and digital platforms can help you is by enabling you to access telehealth services. Telehealth refers to the delivery of health care services and information through electronic means, such as phone, video, or email. Telehealth can be especially useful for rare disease patients who may face barriers to accessing specialized care, such as distance, cost, or availability. Telehealth can also help you monitor your condition, manage your symptoms, and communicate with your health care team. Some examples of telehealth services for rare diseases are RareCare, Raremark, and Healx.
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Mridul Joshi -Healthcare lT मृदुल जोशी Hospital Applications and Systems
Healthcare IT Implementation HIS/ HIMS/ RIS/ LIS/ LMS, Business Systems and Processes Automation, Infrastructure, Security - Business Continuity & Information Technology Mgmt.
In Today's India, Telehealth Services are increasing it's significance for Service provider's as well as the Patient's... Few Benefits for Patient's are as follows: 1. Convenience and Accessibility 2. Reduced Wait Times 3. Improved Access to Specialists 4. Continuity of Care 5. Reduced Exposure to Illness 6. Increased Patient Engagement 7. Saves Time and Efforts Though "Telehealth Services are still "under utilised" and it is taking high time to be popular...
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Sanamdeep S.
Telehealth services, such as those offered by Envoy Health, break down geographical barriers, allowing patients to consult with specialists across the globe. This is particularly valuable for rare disease patients who may not have access to expert care in their local area.
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A third way that online and digital platforms can assist you is by offering you online learning opportunities. Online learning can help you expand your knowledge, skills, and confidence in managing your rare disease. You can access online learning resources on various topics, such as diagnosis, treatment, research, coping, and advocacy. You can also learn from other patients, experts, and organizations who share their insights and experiences. Some examples of online learning platforms for rare diseases are Coursera, Udemy, and edX.
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Sheena Hemnani
Freelance Medical Writer Specializing in Hematology, Rare Diseases and Medical Devices
Online learning empowers patients by expanding their knowledge, skills, and confidence in managing their conditions. Online learning covers various topics, from diagnosis and treatment to the latest research, making individuals informed advocates for their health. It's an interactive space where patients can engage with experts and fellow patients, contributing to a collective pool of knowledge. Platforms like Coursera, Udemy, and edX offer courses specific to rare diseases and healthcare topics. The flexibility of online learning allows customization to individual needs and schedules. This approach and online communities create a comprehensive support system that enhances the quality of life for those with rare diseases.
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Luiz P.
Hospital CEO
Online learning for rare disease patients includes educational resources, e-learning courses, patient communities, telehealth education, health literacy tools, research updates, disease-specific apps, remote workshops, self-paced learning, and caregiver support. These resources empower patients, enhance knowledge, and improve self-advocacy.
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A fourth way that online and digital platforms can support you is by providing you with digital tools that can enhance your well-being and empowerment. Digital tools are applications or devices that can help you track, measure, or improve your health or quality of life. For example, you can use digital tools to record your symptoms, medications, or appointments; to access your medical records or reports; to participate in research or clinical trials; or to advocate for your rights or needs. Some examples of digital tools for rare diseases are Rarebase, PatientsLikeMe, and Care3.
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Navaneethakrishna Ramanathan
Healthcare App Designer. Aged Care, Interoperability, Human-Centricity, Healthcare systems, Digital Mental Health. Idea to App!
1. Websites / Blogs: Websites dedicated to specific rare diseases provide comprehensive information, research updates, treatment options, and support resources. These sites serve as valuable knowledge hubs. 2. Telemedicine platforms: It enables patients to consult with healthcare providers remotely. This is especially beneficial for those with rare diseases who may need access to specialists in other locations. 3. Symptom Trackers: Apps allow patients to record and track their symptoms over time, providing data that can assist healthcare providers in making informed decisions. 4. Medication Reminders: Apps can send medication reminders and track adherence, helping patients manage complex medication regimens. 5. Online community forums!
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Luiz P.
Hospital CEO
Digital tools aid rare disease patients with telehealth, apps for disease management, online communities, remote monitoring, medication management, tele-rehabilitation, appointment scheduling, clinical trial access, tele-genetics, telepharmacy, and telecounseling, improving care and accessibility.
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A fifth way that online and digital platforms can benefit you is by offering you online entertainment options that can help you relax, have fun, and cope with stress. Online entertainment can include various forms of media, such as music, movies, games, books, or podcasts. You can use online entertainment to distract yourself from pain, boredom, or anxiety; to express yourself creatively; to connect with others who share your interests; or to learn something new. Some examples of online entertainment platforms for rare diseases are Spotify, Netflix, and Audible.
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Luiz P.
Hospital CEO
Online entertainment for rare disease patients provides distraction, social connection, educational content, support communities, accessibility, coping mechanisms, and caregiver engagement, contributing to emotional well-being and joy.
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Sanamdeep S.
For those with rare diseases, online entertainment can be more than just fun; it's a form of therapy. Services like Audible for audiobooks or Twitch for live streaming content can provide distraction, relaxation, and a sense of normalcy amidst ongoing health challenges.
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A sixth way that online and digital platforms can aid you is by giving you access to online resources that can help you find information, support, or services that are relevant to your rare disease. Online resources can include websites, databases, directories, newsletters, or guides. You can use online resources to search for reliable and updated information, to locate local or global support groups or organizations, to apply for financial or legal assistance, or to discover new opportunities or events. Some examples of online resources for rare diseases are Orphanet, NORD, and Rare Disease Day.
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Sheena Hemnani
Freelance Medical Writer Specializing in Hematology, Rare Diseases and Medical Devices
From a medical writer's perspective, online resources are vital support for rare disease individuals. These platforms offer tailored disease information and connect patients to crucial support networks. They simplify the complexities of seeking financial and legal assistance, reducing the burdens on patients. The synergy between these resources, online learning, and communities creates a holistic support system, enhancing the quality of life for those with rare diseases. As a medical writer, I recognize their transformative power in empowering individuals to navigate the complex rare disease landscape, fostering understanding, management, and advocacy.
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Angela De Jesus
Quality Control | Medical Laboratory Scientist | Experienced with Laboratory Regulations, Detail-Oriented, Organized
While TikTok and other online platforms have gotten a lot of criticism, they provide an incredible resource for people who felt isolated by unknown or "rare" conditions. In so many cases, pushing various doctors for a diagnosis and overcoming the rampant medical gaslighting is impossible, leaving people to give up seeking treatment. Seeing others tell similar stories and sharing information they were able to get can be lifesaving. Everyone should take information with a grain of salt, but a lot of creators site their sources and are easily fact checked. This improves medical literacy among patients and can be the key to getting the healthcare they need.
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Brent Janse van Vuuren
🚀 Digital Marketing Nerd |📱Social Media 101 | 🎯 Healthcare & B2B Advertising | 🌍 Passionate about people, places & stories | ✉️ Let's connect | 🇿🇦🏳️⚧️🏳️🌈
Influencer Partnerships: Collaborating with influencers who are either patients themselves or advocates within the rare disease community can amplify messages and create relatable content that can educate and inspire engagement and action. Digital Storytelling: Sharing patient stories and experiences through compelling narratives can help in humanising the journey of living with a rare disease. This storytelling approach can break down complex medical jargon into relatable content that resonates with a broader audience.
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Ajay Behuria
CTO | Head of Innovation | Distinguished Technologist | Director of Technology | Chief Architect
Online platforms offer solace for isolated elderly individuals coping with rare diseases. Through storytelling, patients can connect and share their experiences, fostering empathy and compassion. Augmented Reality and Virtual Reality enable immersive, therapeutic experiences, easing their isolation. Metaverse extends a sense of belonging. Remote patient monitoring and care delivery enhance accessibility. Training, coaching, and counseling through digital platforms empower patients to manage their conditions effectively. This approach can benefit people of all ages, particularly those in remote areas with limited access to traditional healthcare services, offering a lifeline of support and understanding.
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