How a community-first strategy drove rare disease adherence at scale
Patients with sickle cell disease face stigma, isolation, and reluctance to start infusion therapy. RxPx combined private patient platforms, patient ambassadors, social media, and tailored education to change all three — in just 3 months.
- 66% increase in patient platform population through targeted acquisition strategy
- 79% user retention — 45% higher than the industry average
- 6,000+ patients actively engaged across the platform community
Trusted by leading life sciences companies
Proven at scale.
Why SCD patients resist starting therapy – and how RxPx changed the narrative.
Stigma, isolation, and reluctance in the rare disease space
A pharma brand launched a new therapy to reduce the frequency and severity of organ-damaging pain crises in SCD. But with no cure available, patients were reluctant to start – let alone stay on – infusion therapy. The barriers went beyond clinical.
Patients face stigma and disbelief when reporting painful vaso-occlusive crises
Deep sense of isolation – 90% of US SCD patients are non-Hispanic Black or African American, an underserved population with historical distrust of healthcare systems
No existing community for patients to connect with others sharing the same experience
Low therapy commencement and high discontinuation due to fear and lack of peer support
A multi-channel community strategy built on shared experience
RxPx developed a private patient platform anchored by patient ambassadors, social media, user-generated content, and tailored education – creating a support ecosystem that addressed the emotional and practical barriers to therapy adoption and adherence.
Private patient platform providing a safe, moderated community space
Patient ambassadors sharing lived experience to normalise therapy and reduce fear
Social media and user-generated content strategy to drive awareness and acquisition
Tailored educational content supporting patients from diagnosis through ongoing treatment
Beyond the data.
Real feedback from patients across RxPx programs.
“I used to sit in hospital beds wondering if there was someone out there experiencing what I am experiencing. Now I KNOW!”
“This community has helped me so much! I love being able to associate with people who can relate to the everyday obstacles I face.”
“It’s overwhelmingly comforting to have people understand my day-to-day problems. The thought of not feeling alone with this cruel disease makes me emotional.”
What you’ll walk away knowing.
The multi-channel strategy blueprint
How RxPx combined private platforms, ambassadors, social media, and UGC into a unified rare disease support ecosystem – deployable in 3 months.
Why rare disease patients need more than clinical support
The emotional and social barriers unique to SCD – stigma, isolation, distrust – and why addressing them is the only way to achieve adherence at scale.
Acquisition, retention and engagement outcomes
66% patient growth, 79% retention (45% above average), 6,000+ active patients – the full results and what drove each metric.
How to apply this to your rare disease program
A framework for replicating this community-first approach across other rare or stigmatised disease areas where traditional PSPs fall short.
A look at what you’ll discover.
The challenge: stigma & reluctance in rare disease
Why SCD patients resist starting therapy, the unique barriers this population faces, and why standard pharma support approaches consistently fall short.
The RxPx approach: a multi-channel support ecosystem
How RxPx designed a multi-channel ecosystem – private platform, patient ambassadors, social media, and UGC – to drive commencement, retention, and engagement simultaneously.
Unlock full access
to case study.
Ready to see
the full results?
See exactly how RxPx drove 66% patient growth and 79% retention for a rare disease therapy – and what the community-first model means for your next program.
- 66% increase in patient platform population through targeted acquisition strategy
- 79% user retention — 45% higher than the industry average
- 6,000+ patients actively engaged across the platform community
Why Most Therapies Fail After Approval (And No One Talks About It)
Every pharmaceutical launch is measured against ambitious commercial forecasts.
How Do We Embrace AI Without Compromising Ethics, Governance, and Trust?
How Do We Embrace AI Without Compromising Ethics, Governance, and Trust?
The Industry Shift Emerging From AXS26: From Fragmentation to Integration
At Asembia AXS26, one message surfaced repeatedly across conversations with manufacturers, specialty pharmacies, hubs, and patient support leaders: healthcare fragmentation is becoming impossible to ignore.