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Facebook Connects the Rare Disease Community

While the platform faces scrutiny, many say it’s a lifeline for patients desperate to find one another.

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Information about rare diseases was hard to find in the pre-Internet days. Then came an explosion of online content and social media platforms, including Facebook.

As its influence grew exponentially, criticism followed Facebook and has been especially pointed in the last two years. But with Facebook also came private Facebook Groups, which gather patient families into shared virtual communities. Pre-Facebook, connecting meant writing letters and waiting a long time for a response.

“I’m not a big fan of Facebook, and if I didn’t need it for my advocacy, I’d get off. But it remains the best way for a family in Australia or England to sit down, introduce us to their family, ask questions and connect them,” said Maria Kefalas, a professor at Saint Joseph’s University in Philadelphia and founder of the Calliope Joy Foundation, named for her daughter who has a degenerative brain disease called late-infantile onset metachromatic leukodystrophy.

Keflas spoke at this year’s Breakthrough Summit hosted by the National Organization for Rare Disorders (NORD) among a group of panelists who discussed the platform’s impact.

Finding Out About Clinical Trials

In 2013, the Kefalas family started selling cupcakes to raise a little money to help families and champion research. Their effort exploded over the years and they have now raised more than $800,000, enough to give research a real push. While scientists explore treatments and potential cures, families need online community and friendship to cope with a devastating diagnosis.

“On several occasions, but certainly in the last year, we’ve been contacted about a child with the disease and referred them to life-saving clinical trials,” said Kefalas, who has written a book about her experiences a mother. “They wouldn’t have found us as quickly as they did without Facebook.”

CSL Behring also uses Facebook to reach the rare disease community.  CSL Behring's Facebook community has been growing, and recently passed more than 100,000 likes on the platform. This has allowed CSL Behring to amplify stories about the rare disease community and reach more patients who may be searching for information or answers.

Beyond a virtual meeting room, online platforms like Facebook offer “peer-to-peer healthcare,” according to the Pew Research Center. People who are walking similar paths can provide advice to one another. One survey found that young people are particularly likely to go searching for peer health advice online.

Setting Standards and Blocking Misinformation

Facebook changes patients’ lives and it’s critical for clinical trial recruitment, Kefalas said. But she added that “how we use it responsibly is such an important discussion.”

Facebook is taking steps to control misinformation and adding more resources for administrators who run the members-only groups, said Jessica Vanner, a rare disease patient and Senior Group Director of Paid Social Media at Real Chemistry, a health innovation company. It helps if administrators, who oversee Facebook groups, can approve posts and get alerts about certain keywords.

“Admin education is going to be pivotal as this continues to grow so the misinformation and unhelpful conversations are derailed,” Vanner said. “But they still have a far way to go.” 

Beyond those safeguards, Facebook group administrators must explain the rules and expectations – and then enforce them, said Maria Picone, mom to a daughter with the rare disease Prader-Willi Syndrome and Co-founder and CEO of TREND Community, a digital health analytics company that analyzes public social media conversations. At its best, the free platform functions as a kind of help desk for rare disease patients when resources are slim and stakes are high. 

“From our community, there are insights available online that may not have yet made their way into medical and scientific literature,” Piccone said. “The positives outweigh the negatives, we are rare, our numbers are small. We were talking about people writing letters and it taking three years to get connected to another patient or caregiver so I think it is a lifeline for most rare disease communities.”