Rarity Health
The Trusted Partner in Rare Disease Communications

The impact and influence of advocacy groups within the clinical development and approval process have grown in recent years. However, establishing efficient and thoughtful collaboration between advocacy groups and medical or pharmaceutical companies is still a challenge for many marketing agencies.

Advocacy and pharma have always spoken different languages. Interpreting each group’s needs can be a hurdle, especially when it comes to rare diseases. Changing requirements associated with patient access, disease awareness and budgets further complicate the situation.

An independently-owned healthcare communications agency, Rarity Health serves as uncommon link between pharmaceutical innovators and the diverse needs of patients and healthcare professionals. It specializes in launching and marketing impactful rare disease medicines.

Over the past 30 years, Rarity Health has formed meaningful and lasting relationships with KOLs, medical educators, patient advocacy groups, patients, and pharmaceutical companies.

“We illuminate the path from groundbreaking medical discoveries to real-world applications, ensuring that vital information reaches the right audiences in the most effective way possible,” says Rob Newland, managing partner. “We are more than a communications agency; we are a partner in the journey towards better health outcomes, dedicated to bringing rare insights and exceptional strategies to the forefront of healthcare.”

Rarity Health prioritizes a holistic approach that goes beyond providing a starter kit or patient assistance. Agency strategy begins with gaining a deep understanding around the experiences of individuals managing specific conditions or diseases, as well as empathizing with the realities of being a caretaker. Key inquiries at this stage revolve around identifying potential gaps in the care and comprehending the multifaceted challenges they encounter, both in healthcare settings and day-to-day lives.

From there, Rarity Health collaborates with KOLs or pharmaceutical partners to address patient needs with impactful and life-changing tools. The agency specializes in turning complex challenges into compelling stories. Through projects like the growth hormone patient and caregiver support program, ‘Growing Connections,’ and numerous innovative hemophilia campaigns, Rarity Health has demonstrated agility and expertise in delivering tailor-made solutions that resonate with audiences and deliver long-lasting results.

“Hemophilia, a rare bleeding disorder, affects a small but significant portion of the population, with hemophilia B being even rarer. Historically, information dissemination primarily focused on the more prevalent hemophilia A, leaving those with hemophilia B feeling overlooked. We ran the hemophilia unbranded program to remedy the situation for a client that was manufacturing products for the hemophilia B market,” says Newland.

The first step was assembling a diverse advisory board comprising patients, caregivers and advocates. Through collaborative discussions, it became evident that there were substantial knowledge gaps concerning major life milestones for individuals with hemophilia B.

Rarity Health developed unbranded patient education materials tailored to specific milestones like starting school or participating in sports. Termed ‘B2B’ (B for hemophilia B), the peer-to-peer educational initiative featured real-life stories of patients navigating these milestones. The materials were disseminated through partnerships with advocacy groups, ensuring widespread availability.

What set this program apart was its longevity and adaptability. Over almost two decades, the advisory board met regularly, refining existing programs and generating new ideas directly from the hemophilia community’s needs. Through meaningful collaborations, the unbranded program not only provided valuable education but also fostered lasting relationships between stakeholders.

In another rare disease case, Rarity Health’s ‘Growing Connections’ program addressed the challenges faced by children and families dealing with growth hormone deficiency, a condition that impedes normal growth due to hormonal imbalances, necessitating lifelong treatment.

The program aimed to empower newly diagnosed patients and their families by showcasing success stories of individuals who had overcome the challenges of growth hormone deficiency. Through partnerships with advocacy groups like The Magic Foundation, Rarity Health ensured that older patients shared their experiences via video testimonials, offering insights and motivation to those embarking on similar journeys. It fostered mentorship opportunities between older and younger patients. Activities were organized at annual conferences, facilitating face-to-face interactions and real-time engagement. By leveraging both digital platforms and in-person events, the program created a supportive network wherein individuals could find guidance, inspiration and practical advice.

The success of these programs underscores the significance of peer support and community-driven initiatives in rare disease management. Through collaborative efforts, manufacturers, advocacy groups and patients can bridge educational gaps and foster a sense of belonging within the rare disease community.

With an eye toward the future, Rarity Health is poised for expansion. It is looking to forge partnerships with pharmaceutical companies and advocacy groups to expand its network and continue making a meaningful difference in the field of rare diseases.