Honor Friends, Family and All People with Rare Diseases: February 28, 2023 is Rare Disease Day

An annual event to help raise awareness of rare disease patients
· 10 min read

Optime Care is pleased to recognize Rare Disease Day on February 28, an annual event to help raise awareness of the 7,000+ rare diseases that impact 1 in 10 Americans and over 300 million people globally.

The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. NORD works with its sister organization EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases and advocates for health equity for all those living with a rare disease.

People with rare diseases have unique patient journeys and require specialized care which is often difficult to access. Challenges to receiving diagnoses and barriers to care are some of the issues those in the rare disease community face.

People with rare diseases report significant delays in receiving diagnoses for their conditions, some even reporting waiting as long as seven years before finally getting an accurate diagnosis.


Due to the rarity of these diseases, physicians often mistake the symptoms for other, more common conditions. Those seeking specialists often must wait for availability and even travel to other parts of the country to see doctors with experience with their conditions. In a survey of patients with rare diseases, 80% of people said they see at least one specialist and 39% reported needing to travel more than 60 miles for the visit.

Many rare diseases require more research to develop treatments. There are only FDA-approved therapies for a few hundred of the thousands of rare diseases. For those who have a condition with treatments available, they must overcome access barriers like costs, receiving pre-approval from insurance and getting referrals for specialists who can prescribe them.

Value of Optime Care

Optime Care’s expert care coordinators are familiar with the patient journey of those with rare conditions and use the patient-first approach to enable innovative solutions serving the entire specialty pharmacy industry including patients, payers, life sciences and providers.

The team ensures continuity of care through clinical interventions delivered at key points in the patient journey to avoid lapses in therapy and improve quality of life for these patients. Care coordinators provide exceptional support to caregivers, healthcare providers and biopharma partners, with experienced specialty Rx pharmacists available 24/7 to play a critical role in helping to manage the clinical and non-clinical issues associated with rare diseases.

Finally, Optime Care’s unique financial pharmaceutical services, include custom copay assistance programs as well as first-in-class loan-based assistance services providing a “pay-over-time” model to offset the costs of expensive cell/gene therapies and provide access to these curative therapies.

Be sure to support the rare disease community on February 28th and throughout the year. Visit the National Organization for Rare Disorders for information on getting involved.

Learn more here.

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