Rare in common: Health Union’s newest social community aims to connect across rare diseases

Rare diseases, by definition, are small categories with fewer patients. Yet, the individuals and families dealing with some of the 7,000+ recognized rare conditions share common experiences. Delayed diagnoses, insurance challenges and finding physician expertise are typical challenges across most rare conditions.

So Health Union is creating a new online forum to connect people under a broader rare disease umbrella — and also give pharma companies another way to connect with those patient influencers. Health Union’s established social network of patient groups includes eight specific rare disease groups, along with dozens of more common health conditions from asthma to thyroid eye disease, but the new RareDisease.net aims to include anyone with a rare condition.

The pharma connections through Health Union can help those looking for rare disease patient leaders for research, insights or marketing efforts as influencer spokespeople. Health Union debuted its Social Health Network practice in June that connects patients to patients but also offers advocacy skill training and paid healthcare company opportunities.

Amrita Bhowmick

“It’s a win-win because pharma, of course, is trying to reach these patients, but patients are also trying to learn more about treatment options, clinical trials, diagnostics, etc.,” said Amrita Bhowmick, Health Union’s chief community officer. “And it’s even more important for this community because it’s so underserved and it’s harder for people to get information.”

At Raredisease.net, newly diagnosed patients and families can browse content about rare disease basics, diagnoses, management, clinical trials, advocacy and more. Its social media accounts on Facebook, Twitter and Instagram will serve as gathering and content-sharing hubs. Health Union is also planning future special live events that will crisscross rare diseases.

Collectively, an estimated one in 10 people in the US (about 30 million) have a rare disease, and online health communities have proven to be important, Bhowmick said.

“There’s been massive growth, awareness and interest — and need — around rare diseases and a lot of that is the power of the internet bringing people together and driving awareness, but it’s also increasing diagnosis rates and identification of these diseases,” she said. “…What’s interesting is there’s a bit of a Venn diagram overlap with many people with varying rare conditions having similar experiences and challenges.”

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