Rare disease & the dilemma of access in MENA

  • There is around 7,000 rare disease.
  • 61% of rare disease patients had been denied or faced delays accessing treatments.
  • There is a massive gap in access to treatment for rare disease patients in the middle east region.
  • Magpie Concept solutions can help pharma & biotech companies build innovative access solutions in the middle east region.

Rare diseases are a broad group of conditions that affect a small number of people. Most patients have no treatment or management options available for their condition. As awareness and understanding of rare diseases are often low, many patients struggle to find adequate information about their condition. They may feel isolated, overwhelmed, and unsupported. This limitation of treatment and support has a significant emotional, psychological and financial impact on patients. In the last two decades, concerted public policy efforts have led to a marked improvement in the understanding of many rare diseases and the availability of effective treatment options. However, rare diseases pose particular challenges for research and clinical development. Even if treatments exist, patients may wait several years for a correct diagnosis. Many patients are unable to receive them as often they are not reimbursed by their national health care system or are simply unavailable in their country. 

According to a survey conducted by the National Organization for Rare Disorders (NORD), 61% of patients had been denied or faced delays accessing treatments that required pre-approval from an insurance company, and 18% had been denied referral to a specialist.Patients with rare diseases should have the same right to treatment and care as patients with other common diseases. Therefore, national governments and healthcare systems across the globe should prioritize improving care for rare disease patients and optimize access to treatment and follow-up tests.

  • To learn more about our solutions for rare diseases, contact us at hello@magpie-concept.com.