Board Chairman, Global Genes & Senior VP of Rare Disease, Dohmen Life Science Services

Wendy White is a thought leader working in rare disease at the intersection of business, advocacy and technology. She founded, grew and transitioned Siren Interactive Corporation to Dohmen Life Science Services as part of a long-term vision to integrate patient-level insights into the drug delivery continuum She spent 5 years on the board of the National Organization of Rare Disorders (NORD), is the chair emeritus for the Healthcare Business Woman’s association and now after 2 years of serving on the Global Genes Board, she has accepted the position as Board Chairman. She is the mother of a child with a rare disorder and publisher and co-author of Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers.

TRNDS Speaker Spotlight

Why are you participating in TRNDS 2017?

I’m very impressed with the great work being done in rare diseases at the University of Rochester. It’s vital that leading institutions continue to learn about, and play a larger role in helping to solve the unique challenges of the rare disease community, from specific therapies and protocols to the real-life impact on families. In that regard, it is particularly encouraging that the U of R will be including the patient voice in this endeavor.

What do you see as the biggest opportunities to accelerate rare disease therapeutic development?

The greatest opportunities for therapeutic success are in the areas of collaboration and sharing of experiences and data. There are over 7,000 rare diseases and within each, many silos of overlapping efforts. Currently, EMR’s, patient registries, and drug failure learnings are not consistently shared among organizations working towards similar goals. The opportunity to learn more and faster, as well as to apply findings to improve real-life patient outcomes, and attract sufficient financial support, is tremendous if we consider ourselves part of a single rare disease community, rather than thousands of discrete, often competing entities.

Additionally, patients and caregivers, who are the closest to understanding the effects of a disease, are simply not being brought into the overall “conversation” early enough. Rare disease patients are doing much more than fundraising. They have a long history of activism and stepping up to the table in many areas including today even conducting their own research, and starting bio-tech companies. The opportunity to fully involve them throughout the process is as critical as collaborating across the professional spectrum.

For example, current best practice for researchers is to leverage Patient Advisory Boards to identify, not just barriers to clinical trial participation, but also factors to inform clinical trial design, which can potentially save researchers years of work.

What are the top 3 priorities for rare disease research in the 21st century?

  1. Data standardization: If we can agree to standards and implement the right inducements for data gathering and use, we can begin to follow through on the promise of big data solutions applied to the rare disease space.
  2. Genomics: This field offers an incredible opportunity to learn more about rare disease and in the process, all the rest of us. As Tim Cote said at an early NORD summit, “Everything we’ve learned about the human condition, we’ve learned from people born with rare disease. When someone is born without a factor or an enzyme we figure out what is happening and apply that learning to our knowledge of science.”
  3. Medical Ethics: As we break new ground in the rare disease space, we need to continually examine our medical ethics practices and requirements. How much privacy needs to be ensured? How much profit is reasonable? At some point we’ll even need to consider new questions such as if you can you patent your own genome. Progress in this area will need to parallel therapeutic and technical advancement.

Tell us about efforts by Global Genes to unify the rare disease community and drive therapeutic development.

Global Genes is all about grass roots collaboration to activate and support patients and caregivers along their advocacy journey. We do this through a combination of education, mentoring, and interaction among many different stakeholders. This year, we are particularly excited to be launching our first partnering event exclusively dedicated to the rare disease sector. It is being held at the same time as our patient summit and will allow investors, bio-tech, researchers, and patient groups to interact more effectively in a new and exciting venue.

You published a book called Uncommon Challenges; Shared Journeys: Stories of Love, Hope, and Community by Rare Disease Caregivers, please tell us a bit about it.

As a business professional and rare disease caregiver, I published a book of compelling patient stories to illustrate that although we all travel seemingly unrelated and isolated paths, we have many common challenges. The more all the stakeholders in the rare disease ecosystem recognize this and work together, the more effective it will be for everyone. My message will always be that we are stronger and more successful as an overall community.

About Dohmen
Headquartered in Milwaukee, Wisconsin, Dohmen has been finding ways to create an efficient, effective and easy to use healthcare experience since 1858; first as an apothecary, then as a manufacturer, later as a wholesaler and today as the parent company of Dohmen Life Science Services, SIREN Interactive, and Red Arrow Software Labs. As the trusted partner to more than 700 BioPharma and MedTech innovators, Dohmen propels start-up, mid-tier and Fortune 500 companies with support services that span the commercialization continuum from pre-approval regulatory consulting to in-home patient services. Privately held and conflict free, Dohmen is uniquely positioned to propel personalized healthcare for life science innovators and individuals. Learn more about the Dohmen family of companies at