To make a real impact in healthcare, you have to work across multiple stakeholders. In this episode of Leading with Health, Kimberly Haugstad, Chief Executive Officer of Global Genes, joins me to discuss the impact multiple stakeholders can have when they work together.
Global Genes is an international nonprofit organization that connects, empowers and inspires the rare disease community. With a focus on encouraging collaboration between all rare disease stakeholders, Kimberly is currently expanding Global Genes’ programs and services to provide a larger patient impact globally.
3:45 – KH: “The reality is rare disease impacts so many different people. The rare component comes in with how many people are diagnosed with a particular disease.”
4:20 – KH: “There are 350 or 400 million people on the planet that are impacted and living with rare diseases. So rare is a funny word because it is not so rare.”
6:05 – KH: “Our families that are diagnosed go through multiple years finding their diagnoses. And additional years finding a physician to treat them and care for them.”
8:51 – JM: “When we value treatment over care, we forget that a lot of what heals us isn’t the treatment, it’s the connection with others. It’s the feeling that we’re not alone and it’s the feeling that somebody is taking care of us or will be there for us.”
13:18 – KH: “We can help with guidance and support in how to form that support group. And as the group gets stronger, we provide services and support and coaching to help those organizations start an actual foundation.”
16:00 – KH: “I am absolutely blown away by the depth of knowledge of the patients in the rare community. Because no one knows about your disease, you literally need to become an expert.”
19:45 – KH: “It is a passion of ours at Global Genes to get the patients involved in the process. And involved early on before a clinical trial gets started.”
20:25 – KH: “The Rare Drug Development Symposium is a wonderful opportunity to bring folks together and really dig in and talk.”
22:25 – KH: “We have to really honor that everyone is coming from their own place.”
26:47 – KH: “We invite student doctors to be a part of the Rare Compassion Project where they meet patients who are members of the rare community.”
Leading with Health is hosted by Jennifer Michelle. Jennifer has a Master’s in Public Health and Epidemiology and is a certified EMT. As President of Michelle Marketing Strategies, Jennifer specializes in healthcare marketing. She is on a mission to help women find their voice so they can create a stronger, more responsive healthcare system.