6 Strategies to Improve Your Rare Disease Marketing

Published April 18, 2023 | 4 Minute Read

When done effectively, rare disease marketing helps healthcare providers and patients find the resources and support they need to learn more about and seek treatment for a disease.

Marketing for rare diseases can be challenging because such diseases affect only small patient populations. As defined by the Orphan Drug Act, a rare disease is a condition that impacts fewer than 200,000 people in the U.S.[¹]

Likewise, orphan drug marketing is complicated due to the general lack of awareness of these conditions. Orphan drugs are treatments that can effectively remedy a rare disease or that will not be profitable for seven years. These treatment approaches are often overlooked, so patients and caregivers carry the burden of living with these devastating conditions.

As a result, raising awareness of these conditions and potential therapies is vital in helping patients seek optimal care options. In this post, we’ll discuss approaches to rare disease marketing to address its unique challenges.

Rare Disease Marketing Strategy #1: Partner with Patient Advocacy Groups

A patient advocacy group is an organization that provides support and resources to those affected by rare diseases. They can be a critical part of the treatment and support paradigm.

Collaborating with patient advocacy groups helps you reach your target audience and build trust with patients. Partnerships with patient advocacy groups enable you to deliver critical information on disease education, treatment, and patient support options.

Rare Disease Marketing Strategy #2: Leverage Social Media

There may be no better outlet for reaching niche audiences than social media. Social media effectively builds patient and caregiver communities and creates forums to facilitate disease awareness and support.

Social media has many benefits, including accessibility, reach, and a minimal investment level, to name a few.

Platforms like Facebook, Twitter, and LinkedIn help you establish a community of patients, caregivers, and healthcare professionals. Keep your audience engaged and informed by posting regular updates and sharing relevant content.

Recent Articles

Right Message, Right Moment: Leading the Future of Health Advertising with Context and Precision

April 22, 2025

Marketers are increasingly prioritizing contextual relevance, with a notable percentage shifting back to endemic advertising – and Health Union is prepared to deliver.

From Silos to Synergy: Integrating DTC and HCP Messaging

April 13, 2025

Could connecting DTC and HCP messaging be the missing link for bigger impact?

Health Union’s Strategic Advantage: Thriving in the New Era of AI-Driven Digital Health

April 8, 2025

Discover how Health Union is strategically harnessing the power of AI, not to replace connection, but to amplify it.

Rare Disease Marketing Strategy #3: Participate in Conferences and Events

Attending conferences and events is an excellent way to showcase new drugs for rare diseases and network with key stakeholders. It is an opportunity to increase awareness of products and form relationships with patients, caregivers, and healthcare professionals

Health Union’s geofencing capabilities make it possible to deliver targeted advertisements and content to a specific population within a particular location. Our team helps you raise awareness for and promote your products and services to those who would benefit the most from them.

Rare Disease Marketing Strategy #4: Leverage Patient Stories

Patients and their families are often the best advocates for rare diseases. By featuring patient stories on your website, social media, or other marketing materials, you can help humanize rare diseases and create an emotional connection with your audience.

Allowing patients and families to share their stories also offers valuable insights and feedback that, in turn, helps improve your products and services.

Rare Disease Marketing Strategy #5: Work with Key Opinion Leaders

Collaborating with experts in the field who can provide insight and recommendations to healthcare professionals is a great way to raise awareness about products, treatments, and rare diseases themselves.

Likewise, working with these individuals helps build trust and credibility between you, healthcare professionals, and patients.

You might also be able to learn more about the disease, its treatment options, and patient care. Key opinion leaders are a great way to create educational materials for healthcare professionals that make a difference.

Rare Disease Marketing Strategy #6: Provide Education to Healthcare Professionals

Healthcare professionals are often the first point of contact for patients with rare diseases. That means educating them about the disease and available products or treatments helps ensure patients get the care they need. Education involves presenting information about a disease’s epidemiology, scope, and other details to allow healthcare professionals to better approach rare disease management.

Summary

Effective rare disease marketing requires a patient-centered approach and a deep understanding of the disease and its impact on patients’ lives. By partnering with patient advocacy groups, working with key opinion leaders, and providing education to healthcare professionals, you can effectively market your products, boost research and development, and improve patient outcomes.

Remember that every patient is unique and marketing strategies must be tailored to their needs. By keeping patients at the center of your marketing efforts, you can create a meaningful impact on their lives.

____________________________________________________________________

Learn more about Health Union’s vision to transform data-driven, healthcare marketing: The HUman Side of Data.

Sources

Genetic and Rare Diseases Information Center (GARD). (n.d.) About GARD. National Institutes of Health. Retrieved April 12, 2023, from https://rarediseases.info.nih.gov/about

Recent Articles

Right Message, Right Moment: Leading the Future of Health Advertising with Context and Precision

April 22, 2025

Marketers are increasingly prioritizing contextual relevance, with a notable percentage shifting back to endemic advertising – and Health Union is prepared to deliver.