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Leapcure Advocacy Corner
United States
เข้าร่วมเมื่อ 21 เม.ย. 2023
Hello! We're the Leapcure team, and we work to connect patients with clinical trials to make research more equitable and efficient, with patient advocacy at the forefront.
A core part of our mission is supporting the advocacy space and empowering patient voices. This space is dedicated to our conversations with the incredible patients, advocacy leaders, and caregivers who are generous enough to share their time with us. We've learnt so much from them, and we hope you will too.
A core part of our mission is supporting the advocacy space and empowering patient voices. This space is dedicated to our conversations with the incredible patients, advocacy leaders, and caregivers who are generous enough to share their time with us. We've learnt so much from them, and we hope you will too.
Christine Gustafson's Thyroid Eye Disease (TED) Journey
Discover Christine Gustafson's 10-year battle with Thyroid Eye Disease (TED) 🦉 and her path to becoming the Executive Director of the TED Community Organization. Learn about TED symptoms, treatment options, and life-changing surgery 🏥.
#thyroideyedisease #PatientStory #TEDClinicalTrials
Follow Christine and TED Community Organization's work:
🌐 Website: tedcommunity.org/
📸 Instagram: tedcommunityorg
Learn more about Leapcure:
🌐 Website leapcure.com/conditions/thyroid-eye-disease
🔍 Looking to participate in TED clinical trials: research.leapcure.com/studies/tedresearch?locale=en to sign up and contribute to groundbreaking research.
📸 Instagram: leapcure
🔗 LinkedIn: www.linkedin.com/company/leapcure/
#thyroideyedisease #PatientStory #TEDClinicalTrials
Follow Christine and TED Community Organization's work:
🌐 Website: tedcommunity.org/
📸 Instagram: tedcommunityorg
Learn more about Leapcure:
🌐 Website leapcure.com/conditions/thyroid-eye-disease
🔍 Looking to participate in TED clinical trials: research.leapcure.com/studies/tedresearch?locale=en to sign up and contribute to groundbreaking research.
📸 Instagram: leapcure
🔗 LinkedIn: www.linkedin.com/company/leapcure/
มุมมอง: 69
วีดีโอ
Myositis Awareness: Waiyee Hui’s Journey from Diagnosis to Advocacy 🌟
มุมมอง 916 หลายเดือนก่อน
Join us in raising awareness for Myositis through the powerful story of Waiyee Hui! 🌟 In this video, Waiyee opens up about her battle with Myositis and Antisynthetase Syndrome, sharing her journey from diagnosis to finding the right treatment. She also discusses how she turned her experience into advocacy by building a supportive community on Instagram. Waiyee’s story is a testament to resilien...
Facing Myositis: Brianna’s Story of Strength, Support, and Hope 💪
มุมมอง 1226 หลายเดือนก่อน
As part of Myositis Awareness Month, Brianna shares her courageous journey living with Myositis. 🌟 From the daily challenges of managing symptoms to the incredible strength found in the Myositis community, Brianna’s story is one of resilience and hope. Join us as we explore her experience with this chronic illness and the vital support system that has helped her along the way. Whether you’re de...
Kambiz Roghanchi’s Journey with Dermatomyositis: Advocacy, Challenges, and Community Support 💪
มุมมอง 1858 หลายเดือนก่อน
Join us as Kambiz Roghanchi, a dedicated volunteer with Myositis Support and Understanding (MSU) and a passionate advocate for Dermatomyositis, shares his powerful journey. 💪 In this video, Kambiz opens up about his personal experience with Dermatomyositis, the diagnostic challenges, and the crucial role of community support for those living with rare diseases. Gain valuable insights into Derma...
Jennifer Miller’s Battle with POTS: Insights, Challenges, and Community Support 🌟💪
มุมมอง 728 หลายเดือนก่อน
Discover Jennifer Miller’s inspiring journey with POTS (Postural Orthostatic Tachycardia Syndrome), a condition she faced while adjusting to life as a new mother. 🌟 As a dedicated advocate with the Dysautonomia Support Network, Jennifer shares her experiences navigating the daily challenges of POTS and finding strength through patient communities. In this video, Jennifer discusses her diagnosti...
HAE Journey: Linda Presler’s 10-Year Path to Diagnosis, Advocacy, and Community
มุมมอง 12810 หลายเดือนก่อน
Linda Presler’s inspiring journey with Hereditary Angioedema (HAE), a condition she has been managing for over a decade. 🌟 As a passionate advocate, Linda shares her personal experiences navigating the challenges of HAE, from a long road to diagnosis to creating a supportive community for fellow patients. Linda’s story highlights the importance of advocacy and community support in living well w...
IPF Advocacy: Terri Pilawa’s Journey and Double Lung Transplant 🌟
มุมมอง 50ปีที่แล้ว
Join us as Terri Pilawa from the One Breath Foundation shares her incredible journey through Idiopathic Pulmonary Fibrosis (IPF) and her life-saving double lung transplant. 🌟 In this emotional and uplifting video, Terri reveals her path from diagnosis to surgery and the hope that kept her going. Terri’s story offers invaluable insights and inspiration for anyone dealing with IPF or caring for s...
Taleena Koch’s IPF Journey: Caregiving, Community, and Self-Care Tips 💪
มุมมอง 177ปีที่แล้ว
Discover the heartfelt journey of Taleena Koch, leader of the Breathe Support Network, as she shares her experience caring for her mother with Idiopathic Pulmonary Fibrosis (IPF). 🌟 In this video, Taleena discusses the origins of the Breathe Support Network, her vision for the community, and essential self-care tips for caregivers. Taleena’s story provides valuable insights into managing IPF, t...
DEI in Clinical Research: Insights from Catina Morrison 🌟🩺
มุมมอง 27ปีที่แล้ว
An enlightening conversation with Catina Morrison of Nurse Loves Essentials as we delve into the crucial topic of Diversity, Equity, and Inclusion (DEI) in clinical research. 🌍💡 Catina shares her expertise and experiences, highlighting the importance of inclusivity in research studies and how it can impact patient care and outcomes. Whether you're involved in clinical research or simply interes...
Amy Gietzen’s Scleroderma Journey: From Diagnosis to Advocacy
มุมมอง 87ปีที่แล้ว
An inspiring conversation with Amy Gietzen of the National Scleroderma Foundation as she shares her transformative journey with Scleroderma. 🌟 Diagnosed at just 19, Amy has become a powerful advocate for young adults living with this challenging condition. Amy’s story is a testament to resilience and advocacy, offering hope and valuable insights to those affected by Scleroderma. Follow Amy and ...
DEI in Clinical Research: Insights from Top Advocacy Leaders
มุมมอง 67ปีที่แล้ว
Join us for an enlightening roundtable discussion on Diversity, Equity, and Inclusion (DEI) in clinical research with three leading advocates: Sharon Lee of the Canadian Pulmonary Fibrosis Foundation, Amy Gietzen of the National Scleroderma Foundation, and Jim Sliney of Patients Rising. 🌟 Gain valuable perspectives on how to make clinical research more inclusive and responsive to diverse patien...
Very informative!
Brianna is such a beautiful person. We connected a few years ago. And I’m glad she is sharing her story.
That’s my best friend🎉❤ strong, beautiful, brave, & the most loving soul! I am so proud of you, your hard work and how far you have come while battling your invisible disease of dermatomyositis 😊! I have learned so much watching you navigate this life long journey and developed much more respect and awareness for people like you who are warriors! 💪🏻💙 Love you!!!
Thank you Kambiz for sharing your story and for reminding all of us that even living with a rare debilitating disease, we can still live our best lives! lis (DM since 2008)
Nice interview and I appreciate hearing the patient's experience and journey. He has a wonderful attitude and perspective on how he has learned to manage his life and live with the disease, and incredibly, help others.
I hear about case info : 7.714 case. From Unicef 1 people $ 10 milion I'm only get Rp. 12 milion/people
Thank you so much Rithana, and Leapcure, for the opportunity to participate in this interview. I am always pleased to be able to share what my Breathe Support Network does and to share my experience as a caregiver in hopes of helping other caregivers along their journey. 💙💚 #LIVEwithPF #BREATHE #BreatheSupport #CUREforPF #advocacy