Underserved Markets

Connecting Minds, Changing the Future of Rare Disease patients

One underserved market that we are passionate about and that is finally getting the attention it deserves is the rare disease/orphan drug community. New thinking, coupled with cutting edge technologies and services, is allowing manufacturers and the companies that serve them to disengage from the blockbuster model and create more effective strategies to meet the needs of their patient and healthcare professional populations.

Diagnosis is difficult and can often take up to ten years. Patients who have unusual and complex symptoms challenge time-constrained physicians, many who have never seen a patient with the same rare disease before. The patients are desperate, searching for a reason for their ailments and knowing that time is working against them. Often, once finally diagnosed, they endure the additional heartbreak of finding out that there is no treatment.

The NJ Rare Disease Alliance, in conjunction with SculptaHealth, BioNJ and NORD co-sponsored a Rare Disease Day event on March 16, 2015 in Trenton.

Our interest in this space is both personal and professional. As patient advocates, we have seen firsthand the challenges of suffering with ineffective or no treatments. We have seen, sadly, lives derailed and dreams extinguished. But we have also been privileged to see the warriors — those who fight everyday for more research, for more treatment options, and for healthier lives. The pharmaceutical and life sciences industry, OUR industry, is fighting, too, making extraordinary progress and providing hope. 2014 was a banner year, breaking records for new drug approvals, orphan drug designations and orphan drug designation requests.

No one has the answers to unlock all of the mysteries of rare diseases, but with intensified focus, collaboration, and the willingness to think differently, there is great opportunity. While there is much work to be done, there are many rewards to be realized for patients, for healthcare professionals and for pharmaceutical companies. We'd like to be a part of the journey. Together we can discover new go-to-market strategies to provide additional tools to physicians and more support for patients, ultimately resulting in better patient outcomes and improved lives.

Call us and let's talk. The more minds we can connect, the closer we'll be to changing the future.

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In the News

SculptaHealth's Ellynn Szoke was quoted in the February 2014 PharmaVoice article "Rare Diseases: The Patient as Collaborator" for her work as VP of Advocacy and Outreach at the Cluster Headache Support group.

"In the past, pharmaceutical companies focused their attention on the blockbusters and orphan drugs weren't seen as economically feasible to develop and bring to market. If a rare disorder is not determined to be fatal, there can be a lack of true awareness on the part of pharma as to the importance of finding treatments" — Ellynn Szoke

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