Press Releases

Navigating Your Rare Disease Guide Released on Rare Disease Day to Raise Awareness and Empower Individuals


In honor of Rare Disease Day on February 29th, a global observance dedicated to raising awareness about rare diseases and their impact on individuals' lives, a comprehensive guide has been released to support patients and their families. The "Navigating Your Rare Disease Guide" is now available for free on ( providing valuable information, resources, and empowerment for those navigating the challenges of living with rare diseases.

Guide Highlights:

Link to Guide

Contents: The guide covers a range of topics, including understanding your rare disease, managing symptoms, connecting with support networks, and advocating for better care.

Contributors: This guide includes expert insights from healthcare professionals, patient advocates, and the Behind the Mystery team. Behind the Mystery is a television series airing on Lifetime devoted to raising awareness for rare and genetic diseases.

Rare Disease Day Significance:

Rare Disease Day, observed annually on the last day of February, aims to bring attention to the challenges faced by those affected by rare diseases. With over 300 million people living with rare diseases worldwide, the need for awareness, understanding, and support is more crucial than ever

Why This Guide Matters:

Living with a rare disease presents unique challenges, from obtaining an accurate diagnosis to navigating complex healthcare systems. The "Navigating Your Rare Disease Guide" addresses these challenges head-on, offering practical advice, resources, and stories of resilience to empower individuals and families on their rare disease journey.


"We firmly believe that information is power. This beginner's guide serves as a valuable resource for newly diagnosed rare disease patients, equipping them with the support and tools needed to navigate their unique healthcare journeys," said Molly Mager, Co-Founder of Behind the Mystery and Senior Associate Producer.

How to Get Involved:

  • Share the guide on social media by tagging and following Behind the Mystery (Instagram @behind_the_mystery. X @btmcaresforrare. Facebook @btmcaresforrare. LinkedIn @behind-the-mystery).

  • Encourage discussions and share personal stories to foster understanding and support.

  • Connect with local rare disease organizations and advocacy groups to amplify the impact.

About Rare Disease Day:

Rare Disease Day is a global observance held annually on the last day of February. It aims to raise awareness about rare diseases and their impact on patients' lives, fostering a sense of community and understanding.

About the "Navigating Your Rare Disease Guide":

The “Navigating Your Rare Disease Guide” features insights from healthcare professionals, patient advocates and resources. The guide is available for free.

About Behind the Mystery

Behind the Mystery™ is a recurring series on The Balancing Act® television show devoted to advocating for rare and genetic diseases. The series clarifies the often-complex issues by offering easy-to-understand explanations from top experts in the field through partnerships with foundations and pharmaceutical companies. We amplify the voices of patients, families, and advocates affected by rare diseases via our national television platform. Tune in to Behind the Mystery weekdays at 7:30 a.m. (ET/PT) on Lifetime®, and find all previously aired episodes on


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For media information or media inquiries,
please contact:

Israel Kreps

Kreps PR & Marketing

786.374 3434

Kristen Noffsinger

Kreps PR & Marketing


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