Today is Rare Disease Day: Global Genes’ Lauren Alford Discusses Rare Diseases

A rare disease is a condition which affects fewer than 200,000 people in the U.S. They are also known as "orphan diseases" because pharmaceutical companies were originally not interested in developing treatments for them. The Orphan Drug Act of 1983 created financial incentives to encourage companies to develop new medications for rare diseases.

Lauren Alford, senior director of Marketing and Communications at Global Genes — an organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally — discusses Rare Disease Day and what resources they offer to patients and caregivers.

Q. Why is it important to recognize Rare Disease Day?

A. Rare diseases impact more than 400 million people worldwide. And more than 80% of these disorders are genetically based — so it’s important to not only recognize the rare disease community, but also raise awareness to the general public about their family health history.

Q. What types of resources does Global Genes offer to people with rare diseases as well as their caregivers?

A. Global Genes provides information and education through our toolkits, webinars and in-person meetings. We also connect the rare community to additional resources and other patients through our navigation services and online community platform.

Q. Where can rare disease caregivers find support?

A. Rare disease caregivers can find support from our navigation services, educational materials, and partners such as the National Alliance for Caregiving.

Q. How can healthcare teams — including pharmacists — better support the needs of those living with rare diseases?

A. It’s important for healthcare team members to have care coordination plans in place when an individual is looking for an accurate diagnosis that may be a rare disease. Too often these patients are forced to visit several different providers before they receive a diagnosis and then establish a care plan or enroll in a clinical trial.

AllianceRx Walgreens Pharmacy’s trained pharmacists, nurses, pharmacy techs and patient care advocates understand rare diseases and provide personalized clinical care and support through our Specialty360 Therapy Teams.

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of their mission, they connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf. They serve more than 400-million people globally and nearly one in 10 Americans affected by rare diseases.

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