Rare disease affects over 300 million people around the world, making it a truly global health priority. Rare Patient Voice connects patients and caregivers in Germany, Spain, Italy, France, and the UK, as well as the US and Canada, with opportunities to take part in research studies. Recently, RPV Senior Vice President Pam Cusick shared her thoughts on the importance of including the patient voice in any discussion of rare disease issues in the new issue of the German magazine, #Plus3Magazin.
See p. 20:
Article in English:
Pam Cusick, Senior Vice President, Rare Patient Voice
Important Voice
Rare diseases affect 300 million people worldwide. But because the number of those suffering from a particular disease can be small, medical knowledge can also be limited, making the search for a diagnosis an odyssey for patients and, as a result, their lives a challenge. Fortunately, there are researchers and companies working on therapies and cures. New drugs have to go through an approval process and companies can start marketing and selling once they have approval. Patients play a critical role in this whole process via their participation in clinical trials and market research. My motivation is to make sure they are heard by those who develop the products so that they actually improve their lives. At Rare Patient Voice, we provide opportunities for patients and their families to connect and share their perspectives with researchers and companies – because their products and services affect them. Our network counts more than 100,000 people from the U.S., Canada, the U.K., Italy, Germany, France and Spain who have signed up to participate in studies and are paid for their time. My hope is that policymakers, pharmaceutical companies, and healthcare system stakeholders will take patients’ experiences and perspectives into account in their decision-making processes.
