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Health Union’s newest social community aims to connect about rare diseases – Endpoints News

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 for most rare conditions.

So Health Union is creating a new online forum to connect people under a broader rare disease umbrella — and also give pharmaceutical 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 leaders of rare disease patients for research, insights or marketing efforts as influencer spokespeople. In June, Health Union launched its Social Health Network practice, which connects patients with patients, but also offers training in advocacy skills and paid healthcare companies.

Amrita BhowmickAmrita Bhowmick

“It’s a win-win because pharmaceuticals, of course, are trying to reach these patients, but patients are also trying to learn more about treatment options, clinical trials, diagnostics, etc.,” says 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 on rare disease basics, diagnoses, management, clinical trials, advocacy and more. Its social media accounts on Facebook, Twitter and Instagram will serve as collection and content sharing hubs. Health Union is also planning future special live events that will cross rare diseases.

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

“There has 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 the diagnosis rates and identification of these diseases,” she said. “…What’s interesting is that there is a bit of a Venn diagram that overlaps with many people with different rare conditions who have similar experiences and challenges.”

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