by Ashanti De Silva

One in ten people in the United States have a rare disease. In this sense, it is not as “rare” as one might think. Yet the most alarming statistic is the majority of these patients have yet to find an approved treatment. Translation? Millions of patients are suffering alone with difficult to treat symptoms, desperate to find medical and peer support.

The disconnect between patients and doctors is painfully obvious, with both groups struggling to find and communicate with one another. All of this points to a rather dismal outlook in the healthcare system.

However, last year at the Global Genes Patient Advocacy Summit I met Will, who is working toward closing the gap between patient and support and treatment. Having worked for Baxter, a company manufacturing therapies for diseases like primary immune deficiencies and hemophilia, he was able to meet rare disease patients on occasion and learn about their experiences. It didn’t take much time before he realized few in the general public actually grasped the concept of what a rare disease is and the dire statistics associated with being such a patient.

Unleashing the Power of Social Media Networks

Will is launching WeHealth, a platform which tracks when people share a message and incentivizes them when their sharing results in a positive action — such as connecting a patient with a research opportunity.

They will use “referral-based crowdsourcing,” which has proven very successful in rallying people around national defense causes. Now it will be used it to help the rare disease community. GoFundMe, Kickstarter, and other companies have demonstrated most individuals do want a chance to help others, whether it is the neighbor down the street needing financial assistance, or families dealing with the aftermath of devastating natural disasters thousands of miles away.

Be it Twitter or Facebook, we’re all connected in some way or another online. What if you, or your friend, or anyone in your personal network, regardless of their involvement or knowledge about rare diseases, could become a patient advocate, helping guide patients to resources and potential treatments?

What if you could do this on your Netflix nights or while on your lunch break? WeHealth is looking to take advantage of these existing networks to help patients in need connect to advocacy groups and eventually, clinical trials. It just requires signing up, sharing information, and encouraging those in your network to follow suit.

In today’s world, we no longer have to be directly impacted by an event or illness to be willing to help and become involved. With Rare Disease Week on Capitol Hill having just passed, and pressure for legislation like the 21st Century Cures Act and OPEN ACT, its time to finally include everyone in addressing the issues the rare disease population faces. We are one in ten, or thirty million in the United States alone, and all individuals deserving of quality healthcare and treatments. Companies like WeHealth are providing each of us the opportunity to play a small but important role in bringing rare patients a few steps closer to support, diagnoses, treatments, and one day, possible cures.

About Ashanthi De Silva

Ashanthi De Silva is a rare disease blogger and patient advocate living with SCID-ADA. Originally from Ohio, she graduated from Ohio State University with an undergraduate degree in international relations and a Masters in Public Administration. She lives with her husband and Shih-tzu mix fur ball, Maya, in Logan Square, Chicago, and enjoys traveling every year to see family in Sri Lanka. She is involved with raising awareness for primary immune deficiencies through the Immune Deficiency Foundation. Her new blog, Life with PI (www.lifewithpi.com) focuses on story sharing of her personal experiences, as well as other patients and caregivers

1 thought on “The RARE Spoonful: Breaking the Barrier to Patient Advocacy”

  1. Rita says:

    I was diagnosed with Charhot Marie tooth disease in 2007 I believe , then
    Hypopituitism (multiple hormones) in 2012 .I read it’s very rare but I did not see it on the rare deseases list? Is it not considered abnormal? Because I’ve had such a hard time trying to find a doctor that is knowledgable about it, Rita 🙃

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