Wednesday, August 28, 2019

Aligning With Patientworthy

We are excited to announce our alliance with Patient Worthy, a website that connects people in the rare disease community with a wealth of resources. Their hope is to connect patients with others like them, plus provide them with up-to-date medical research and news. People can also interact by sharing their stories on their website. In their own words, Patient Worthy is “an online publication that provides relevant information to rare disease patients, caregivers and advocates alike. Through education, awareness, and a touch of humor, our goal is to inspire those in the rare disease community to tackle their chronic conditions, armed with the knowledge that they are not alone in their fight. We root for new treatment options, support spreading awareness and encourage the occasionally tough conversation.”

We hope to share our resources with Patient Worthy, like our syndrome booklets, educational overviews, curriculum, and more. We hope Patient Worthy will offer a platform for other families to discover more about the elements of their rare disease that relate to craniofacial conditions. We will benefit from the news Patient Worthy shares about medical, pharmaceutical, and research breakthroughs, hoping to improve the quality of life for those with rare diseases.

What can you do? You can go to their website, explore, sign up for their newsletter, or create a profile. You can share your rare disease story by submitting it on their site, too! Approximately, 40,000 people view the website each day. Let's hope our alliance is mutually beneficial for all, but most especially for those that need the information the most: families and friends of those with rare diseases.

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