The first rule of rare: There are no rules. There are over 7,000 different rare diseases – each with its own symptomology, history, and clinical and political landscape. Most are virgin territory for marketers; only 5 percent have an approved treatment.

We are on the verge of a medical renaissance, a period of accelerated progress in the treatment and management of rare diseases. This reawakening also brings with it challenges that we must grapple with.

The 30th annual Manny Awards event was held on April 18, 2019, in New York City at Chelsea Piers.

The Healthcare Businesswomen’s Association (HBA) celebrated a milestone 30th anniversary of the annual Woman of the Year event on May 9, 2019, in New York City.

Soon after his departure from FCB Health during April 2019, Rich Levy had a new job; as chief creative officer of Klick Health. In the wake of Levy’s departure, Dana Maiman – president and CEO of FCB Health Network – announced that Kathleen Nanda was promoted to executive creative director of FCB Health New York.

HCB Health, a leading independent U.S. healthcare advertising agency, appointed HCB Partner Nancy Beesley as president.

Evoke, part of Huntsworth plc, acquired specialty health communications agency KYNE during May 2019.

Thanks to a finalized rule requiring price disclosure in DTC advertisements (this is assuming that successful legal challenges do not emerge), what will the impact be and how can the requirement be accommodated while minimizing any confusion that may result?

According to the National Organization for Rare Diseases 2019 Fact Sheet, more than 90 percent of the 7,000 known rare diseases do not have an FDA-approved treatment. It’s a privilege to bring brands to market for the patients, caregivers, families and physicians who so badly need them. In order to effectively launch into the rare disease space, there are elements to consider that take us well beyond standard launch prep. It’s these elements that will set one brand apart from another and contribute to a successful launch.

The statistics are staggering and well-known. Despite an increasing pipeline of drugs targeting rare diseases, 95 percent of the 7,000 disorders classified as rare still have no indicated treatment option. Eighty percent of rare diseases are genetically based, and more than half of the 30 million Americans affected by rare disorders are children. Rare diseases can take five to seven years to be accurately diagnosed, partly because they are inherently difficult to identify and because there are relatively few physicians equipped to recognize and design an appropriate treatment plan for a disorder that will, at most, affect 200,000 people (but often far fewer).