Recognizing Rare Disease Day
Understanding the 6,000-Plus Rare Diseases That Affect a Small Percentage of Our Population
Rare Disease Day, celebrated Feb 28, recognizes the 300 million people around the world living with a rare disease, and their families. According to the National Institutes of Health, a rare disease is one that affects fewer than 200,000 people in the U.S. More than 6,000 identified rare diseases and conditions currently affect only five percent of the worldwide population. At AllianceRx Walgreens Pharmacy, we treat more than 50 rare diseases, including hemophilia, multiple sclerosis and cystic fibrosis. While there are many different causes of rare diseases – the majority are thought to be genetic. In some cases, they can be hereditary, or a person can be the first in a family to be diagnosed.
Challenges of People with Rare Diseases
Patients with rare diseases face a number of challenges. Because rare diseases are often hard to diagnose, patients may not receive a diagnosis until after the disease has progressed. Because of their rarity, doctors may be unfamiliar with many of the diseases. Oftentimes patients may also go undiagnosed or misdiagnosed. Because there are so few cases, access to providers or care centers may be limited. There is also no guarantee of available treatments or drug therapies. If treatment is available, the financial burden can be challenging due to very high cost of medications.
How AllianceRx Walgreens Pharmacy Cares for People with Rare Diseases
AllianceRx Walgreens Pharmacy is one of the largest specialty and home delivery pharmacies in the country. Our patients with rare diseases benefit from:
• Highly experienced care teams dedicated to specific diseases and conditions;
• One of the largest limited distribution drug dispensaries, meaning our patients have wide access to medications that are hard-to-find;
• Custom clinical programs and industry-leading adherence programs;
• Digital tools and clinical support to make managing medications easier;
• Information on financial assistance programs available to eligible patients.
The Future of Treating Rare Diseases
Specialty pharmacies like AllianceRx Walgreens Pharmacy will play a greater role in the gene or cell therapy space in the future. Gene and cell therapies have emerged as a new and exciting field. They are designed specifically for each patient – using the patient’s own DNA to treat, and in some cases, even cure their disease at the genetic level.
Currently, there are over 1,300 gene or cell therapies in development for a large variety of diseases including musculoskeletal, immunological, blood and clotting disorders, rare disease, neurological, cardiovascular and more. These therapies can be very costly. However, with the ability to treat and possibly cure these debilitating and often fatal diseases, the price is small compared to treating the disease over a patient’s lifetime.
These impressive technologies offer hope and promise to millions of patients for the future. At AllianceRx Walgreens Pharmacy, we look forward to bringing our patients access to these therapies.
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