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Learn more about OnePulse connect for healthcare practices
Learn how we can advance patient outcomes with innovative technology solutions
Quick Summary: Rare Disease Day, observed annually on the last day of February, raises awareness for the more than 300 million people worldwide living with a rare disease. For specialty practices in neurology, rheumatology, gastroenterology, oncology, dermatology, and other fields, rare diseases are not rare at all, rare disease patients are a growing part of everyday clinical practice. Biologics and injectable therapies account for over 58% of the rare disease treatment market,1 making provider-administered drug management, in-office infusion, and integrated dispensing critical components of rare disease care.
Rare Disease Day takes place every year on the last day of February, February 28 in most years, and February 29 in leap years, chosen because it is the “rarest” day on the calendar. The 2026 campaign, coordinated by EURORDIS–Rare Diseases Europe and supported by over 65 national alliance patient organizations, carries the theme “More Than You Can Imagine.”2
The theme reflects a reality that specialty practices understand well: while each rare disease individually affects a small number of patients, collectively they represent a significant and growing patient population. There are more than 6,000 identified rare diseases, approximately 72% are genetic in origin, and roughly 1 in 10 Americans is living with a rare condition.3
For healthcare providers, Rare Disease Day is an opportunity to recognize the unique challenges these patients face, long diagnostic journeys, limited treatment options, complex drug regimens, and the emotional toll of managing conditions that many people have never heard of, and to reaffirm a commitment to delivering better, more coordinated care.
Rare diseases are not confined to a single specialty. They span neurology (multiple sclerosis, myasthenia gravis, spinal muscular atrophy), rheumatology (systemic lupus, vasculitis), gastroenterology (short bowel syndrome, rare inflammatory conditions), oncology (rare cancers and hematologic malignancies), dermatology (epidermolysis bullosa, rare autoimmune skin conditions), and many other fields.
Many rare disease therapies are complex biologics, infused medications, or specialty oral drugs that require careful management, coordination, and monitoring. According to recent market data, biologics account for over 58% of the rare disease treatment market, with injectables representing approximately 65% of all rare disease therapies by route of administration.1 The rare disease treatment market is projected to exceed $370 billion by 2030, driven by new biologic approvals, gene therapies, and orphan drug development.1
This means that for many specialty practices, rare disease patients are part of the patient population. The question is whether the practice has the infrastructure, and care coordination in place to serve them well.
Patients living with rare diseases encounter obstacles that go beyond the disease itself. Understanding these challenges is essential for practices that want to provide meaningful, patient-centered care.
The average rare disease patient waits 4 to 7 years for an accurate diagnosis, often seeing multiple specialists before receiving answers.4 By the time patients reach a specialty practice with a confirmed diagnosis, they have often already experienced significant frustration, anxiety, and lost time.
Rare disease therapies often involve infused biologics, enzyme replacement therapies, immunoglobulins (such as IVIG), or specialty oral medications that require prior authorization, benefits investigation, and ongoing monitoring. These are not medications that patients can simply pick up at a retail pharmacy.
When rare disease patients are sent to external specialty pharmacies for their medications, they face the same abandonment risks as other specialty patients—but with higher stakes. According to NCODA, integrated dispensing networks achieve less than 5% prescription abandonment compared to a 20% industry average, and fill prescriptions in under 2 days compared to 14–30 days through external pharmacies.5 For patients with progressive rare diseases, every week of delay matters.
Unfortunately, rare diseases impact far more than health alone. Patients and families navigate financial strain from high-cost therapies, emotional isolation from conditions that few people understand, and the logistical burden of coordinating care across multiple providers and pharmacies.
At Elevate Health Technologies, we believe that rare disease patients deserve the same level of coordinated, accessible, and high-quality care as any other patient population. Our OnePulse Connect innovative solutions including In-Office Dispensing and In-Office Infusion enable a simplified treatment journey and continuity of care for patients.
Many rare disease therapies—including IVIG for myasthenia gravis and CIDP, infused biologics for rare autoimmune conditions, and enzyme replacement therapies for lysosomal storage disorders—require regular infusions that can last several hours.
When patients receive these infusions at their provider’s office instead of at an external infusion center, three things change: their trusted physician is nearby if something goes wrong, the staff knows their history, and the environment feels familiar. Patient satisfaction scores for in-office infusion programs consistently exceed 95%.6
Elevate Health Technologies’ OnePulse Connect – Infusion enables healthcare practices to seamlessly implement infusion treatments at their practice- managing everything from set up and program implementation to treatment administration and patient outcomes tracking. Learn more about In-Office Infusion.
The rare disease treatment landscape is evolving. While infused therapies remain critical, oral specialty medications and self-administered biologics represent a growing category of rare disease treatments. These are medications that patients traditionally pick up from external specialty pharmacies—often with significant delays, communication gaps, and abandonment risk.
Medically Integrated Dispensing brings the dispensing of these medications inside the practice, applying the same philosophy of control and coordination that makes in-office infusion effective. The clinical team can address patient concerns, manage copay assistance, and initiate therapy before the patient leaves the office. NCODA data shows that integrated dispensing networks maintain over 90% adherence rates compared to a 60% industry standard.5
OnePulse Connect – Dispensing enables practices to implement a turnkey physician dispensing program to drive revenue, enhance patient outcomes and streamline care. Learn more about Medically Integrated Dispensing.
Rare Disease Day is more than an awareness campaign. It is a reminder that the infrastructure practices build for managing complex therapies directly impact the lives of patients who are often underserved and overlooked.
If your practice treats patients with rare diseases and would like to streamline care, reduce therapy delays, and enhance treatment outcomes-contact us today.
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Learn more about OnePulse Connect
Elevate Health Technologies is committed to making healthcare better for everyone. We collaborate with healthcare providers, patients, pharmaceutical manufacturers, and payers to deliver innovative technologies that truly make a difference.
OnePulse Connect empowers healthcare practices by optimizing efficiency and streamlining care, whether through buy-and-bill management, inventory tracking, medically integrated dispensing, or in-office infusion services. Our tailored approach delivers deep data insights, advanced analytics, and dynamic patient engagement platforms.
Together, we move as One Pulse, driving smarter, faster, and more connected health technologies for improved outcomes and better patient experiences.
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References
1. Grand View Research. “Rare Diseases Treatment Market Size, Share & Trends Analysis Report.” 2024. https://www.grandviewresearch.com/industry-analysis/rare-diseases-treatment-market-report
2. EURORDIS–Rare Diseases Europe. “Rare Disease Day 2026: More Than You Can Imagine.” https://www.eurordis.org/rare-disease-day-2026-more-than-you-can-imagine/
3. National Organization for Rare Disorders (NORD). “Rare Disease Day.” https://rarediseases.org/rare-disease-day/
4. Global Genes. “RARE Facts.” https://globalgenes.org/rare-disease-facts/
5. NCODA. “Medically Integrated Pharmacy.” National Community Oncology Dispensing Association. https://www.ncoda.org/medically-integrated-pharmacy/
6. Based on Elevate Health Technologies patient satisfaction surveys conducted in 2025.
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