3 Steps to Supercharge Your Rare Disease Advocacy Partnerships

When it comes to rare diseases, creating successful patient advocacy partnerships requires both strategic planning and the ability to build genuine relationships. Understanding the unique realities of living with a rare disease is critical in developing trust within these small patient populations.

Forming an effective partnership can be achieved through these three authentic and empathetic actions: discover, engage, and deliver.

Discover

Because rare diseases by definition affect a slender margin of patients, those most in need of treatment frequently feel isolated and overlooked. Taking the time early on to meet with care partners, physicians, families, and patients will help you gain a deeper understanding of the challenges they face.

Tapping into the wealth of information and experiences these individuals possess builds trust early on and provides valuable, people-first insights that not even the best-designed trial could uncover. Developing communication channels early and often will distinguish your brand as a reliable source with a patient-first approach.

These groups have personal, often emotional, interest in finding effective therapies. Gather their valuable input to not only gain a deeper understanding of the disease state, but also to identify potential partners within the patient advocacy landscape, discover opportunities for engagement, and zero in on key audiences.

Engage

There are numerous obstacles when it comes to the commercialization and treatment of rare diseases—for both the biopharma company developing the drug and the individuals trying to access the therapy. Price point, gaps in education or care, clinical trial recruitment, access, and complicated administration processes are just a few of those hurdles.

For these reasons, advocacy collaboration is essential to ensuring all-around commercialization success.

Individuals, from patients and care partners to healthcare practitioners and benefits administrators, can feel overwhelmed when it comes to a rare disease. Some may even be fearful of treatments, whether the hesitancy stems from reasons real or imagined. Engaging with the community in an authentic manner, listening and responding to their needs, can go a long way in establishing a positive voice in the community. Creating patient groups, securing access, and providing easy-to-understand literature detailing highly technical aspects of these revolutionary therapies are just a few strategies that can be useful in these situations.

Deliver

When engaging with advocacy organizations, become the missing resource they need. Remember: It’s not just about you and your brand, but rather advancing resources in the therapeutic category, listening to concerns, and delivering support in the most appropriate ways possible.

Small patient populations, a reality of rare diseases, mean patient advocacy groups usually rely on shoestring budgets to advance change.

Education and support resources can be essential tools to those coping with the stressors that accompany a rare disease, as well as event sponsorships and pro bono work.

Finally, it is important to recognize no one can do it alone. A transparent approach with good intentions and a positive outlook sets the stage for a symbiotic, long-term, and sustainable relationship.