With advocacy organizations gaining traction, sometimes patients with rare diseases may have a handful of options to choose from. Some patients may be quick to join patient advocacy groups while others may be hesitant or even adamant about not joining such groups. Regardless of what a person decides is best for them, knowing the facts from fiction related to patient advocacy groups is an important step in deciding to participate or not.
- Advocacy groups can help researchers make sure they are working towards the right goals. Instead of making changes and creating therapies that only change a value in a lab, seeing real life consequences and stories can motivate them to create results that improve medical or functional outcomes.
- Patients help researchers know the real life consequences and impact of living with a disease. Consequently, this can help companies have a deeper understanding of how effective therapies can change a patient’s life.
- Working with patients also helps drug developers understand the value of a drug to a community and they can have a better case for an insurance reimbursement body which gives patients a better chance for financial assistance and lower costs.
- Some patients feel uneasy about sharing their personal and private life with people they do not know in patient advocacy organizations.
- There are few legitimate privacy worries when patients engage with advocacy groups. The public does not have access to the membership rolls and organizations do not share external information without getting patient permission.
- A patient advocacy group or organization can range greatly in size and scope, with some raising millions for research every year and having an extensive staff roster; however, others may have no paid employees at all and are more focused on a specific geographic region.
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