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Philadelphia 2019: Patient Champion Finalists Revealed
We have whittled it down to the final three. Here are the contenders for the Patient Champion Award
What makes our species so unique is our ability to spread ideas. This cross-pollination has enabled peace and prosperity to flourish, and ignorance to be supplanted by understanding.
Each of the innovative programs recognized in this year’s awards have made a meaningful contribution to improving people’s lives. Perhaps they have eased the burden on patients, or helped HCPs navigate the demands of their job, or entered a fruitful collaboration. Through sharing their ideas, we hope you too will be inspired.
The winner of this award will be an individual or group who has provided the patient with a voice. A voice that has influenced governments, customers or other patients — and ultimately provided better results for society. Good advocates are able to challenge the status quo, ensure that patients are heard and empowered, and motivate others to account for those in need. We will look for evidence of original work with pharma and health organizations to make a difference. That difference may come in the form of increasing access, understanding, education, value or health benefits to patients and caregivers.
Here are the finalists:
Dr. Karin (Hehenberger) Denoyer, MD, PhD
Founder and CEO of Lyfebulb
Throughout her life as a healthcare professional and as a chronic disease patient herself (type 1 diabetes), Denoyer has noticed that many of the most successful healthcare companies are motivated by a personal cause. She has also observed a gap between the healthcare industry and patients. In a bid to redress this imbalance she founded Lyfebulb, with the goal of empowering and giving a voice to patients.
Lyfebulb’s mission is to reduce the burden of chronic disease through the power of the patient. Lyfebulb is an innovation accelerator that connects people with chronic disease and bridges patient communities with industry and sources of capital. Denoyer observed a gap between the healthcare industry and patients, based on her own experience as a patient with type 1 diabete. Lyfebulb can serve as the platform for healthcare companies that aim to access and develop patient communities, individual patient experts and source user-driven innovation.
Lyfebulb hosts Innovation Challenges in chronic disease areas that aim to empower Patient Entrepreneurs: those who have been motivated by their own diagnosis, or that of a loved one, to start a business addressing a specific problem or unmet need observed in daily life with that disease.
Karin is a vocal champion and advocate for all Patient Entrepreneurs, as she leverages the Lyfebulb platform to elevate patient voices and connect them directly with the larger healthcare industry. As of 2018, Lyfebulb has held Innovation Challenges in partnership with Novo Nordisk, Helsinn, and UnitedHealth Group.
Founder and President of Soft Bones: The US Hypophosphatasia Foundation
For nearly 10 years, Deborah Fowler has served as a voice and a catalyst for thousands of patients and caregivers living with hypophosphatasia (HPP), a metabolic bone condition that affects the development of the bones and teeth.
She organized an entire patient community around this orphan disease, starting Soft Bones US in 2009 as the first patient advocacy group focused solely on HPP. Soft Bones, Inc. is dedicated to providing valuable information and support for people living with hypophosphatasia (HPP), their families and caregivers. Through education, awareness and advocacy, Soft Bones connects, empowers and educates the HPP community to provide support and further research and treatment of the disease.
Soft Bones works on behalf of the HPP community to increase funding, awareness and necessary access for those with the disease. Soft Bones lobbies for increased federal spending to accelerate research, track prevalence and develop drug treatments and therapies. Congressional Briefings and State House events hosted by Soft Bones members educate leadership on HPP, rare diseases and the outstanding needs within the community.
As an organization dedicated to promoting research of HPP, Soft Bones raises funds in order to provide grants to further innovative research by new and established investigators in HPP. Since its inception in 2008, Soft Bones has provided a total of $185,000 in research grants and hosted its first Global Scientific Meeting in 2018, bringing together 50 HPP experts from around the world to share clinical experiences and identify research gaps to help inform treatment and research moving forward.
Soft Bones remains committed to educating about the disease. After establishing HPP Awareness Day as October 30, the occasion is marked each year and Soft Bones conducts ongoing awareness efforts through its social media channels via Facebook, Twitter and Instagram. Soft Bones also maintains a presence on the EURORDIS platform RareConnect.org to translate and connect with patients around the world.
Founder, CEO Company of The Pink Fund
A breast cancer diagnosis can destroy the financial health and well-being of patients and their families. While in active treatment many patients are unable to work and experience a loss of income which can result in catastrophic financial loses.
In a bid to help alleviate this pressure, Molly MacDonald founded The Pink Fund, which provides financial support to meet basic needs, decrease stress levels and allow breast cancer survivors to focus on healing while improving survivorship outcomes.
Macdonald has used her voice to advocate for women in treatment for breast cancer experiencing financial toxicity, sharing her story and theirs.
She is a sought-after speaker on this subject, demonstrating the real problems and decisions patients make around treatment, when cost of care and lost income are factors.
As a columnist for Breast Cancer Wellness Magazine, MacDonald writes on ways patients can mitigate the financial burdens of treatment. She sits on the board of VBID, Value Based Insurance Design out of the University of Michigan, where insurance companies, pharma, providers, and consultants meet to discuss how to reduce the cost of health care to patients while providing high value outcomes.
In 2018 she presented a case study on financial toxicity with respect to breast cancer and sat on a panel exploring potential solutions at the Patient Advocacy Engagement Conference in Baltimore. She led a roundtable discussion at the eyeforpharma Im-Patient Conference in Philadelphia and sat on a patient panel at the Association for Value Based Cancer Care Summit in New York City. She has been invited to join the speaking faculty in April 2019 at CBI’s Formulary, Copay and Access Conference.
Your exclusive opportunity to witness these, plus many other real world, successful case studies awaits! Find out more about the Awards Pitch Day North America here.
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