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Rare Disease Day: Raising Awareness for Patients Living with Rare Diseases

Rare diseases impact individuals and families worldwide. We are honored to participate in Rare Disease Day to help raise awareness among the general public and decision-makers, including policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.

In the United States, a rare disease is defined as a condition affecting less than 200,000 people at any given time. The exact cause for many rare diseases is unknown, but the problem is usually traced to mutations in a single gene for a significant portion. Many of these genetic mutations can pass from generation to generation. It is important to note that genetics is just one part of the cause of rare diseases. Others can be caused by infections, allergies, and environmental causes or are degenerative and proliferative.

Building awareness of rare diseases is critical because 1 in 20 people will live with a rare condition at some point in their life. Despite this, there is not a cure for most rare diseases, and many go undiagnosed. However, there are specialty medications for rare conditions that can help improve the lives of patients living with a rare disease. It is important to note that patients and their families often struggle to pay for the high medical expenses associated with their condition.

In honor of Rare Disease Day, we will be sharing statistics related to rare diseases this week on our social channels. You can follow us on LinkedInFacebook, or Twitter to stay connected and share with your audience using the hashtag, #RareDiseaseDay. In addition, for every like, comment, and interaction we receive on these statistics shared on social media, we will donate $1 to The Assistance Fund (up to $2,500). The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. TAF currency manages more than 70 disease programs, including 46, which cover rare diseases.

“We wanted to select an organization that provides support for the rare disease community,” commented Mike Fieri, Orsini Chief Executive Officer.  “We chose The Assistance Fund for their extraordinary efforts in helping patients and families access the critical care that rare disease families need.” 

Orsini Specialty Pharmacy is honored to be participating in Rare Disease Day. To stay updated on the latest content related to Rare Disease Day, we invite you to connect with us on LinkedInFacebook, or Twitter. To receive a recap on Rare Disease Day, subscribe to the blog to hear from us in a few weeks!