Earlier this year, hundreds of advocates representing every state gathered in Washington, DC for the Rare Disease Week Legislative Conference. Their energy and enthusiasm raised the roof, as they shared experiences and prepared to visit their legislators on Capitol Hill.
What a difference a pandemic makes. We replaced our daily routines with the mostly quieter reality of sheltering at home. When it comes to living with a rare disorder, however, there is no pause button. The needs and concerns of rare disease families and communities continue, and often grow. Access to healthcare providers and treatment facilities is more challenging for patients and caregivers alike. Researchers are suspending clinical trials to ensure the safety of everyone involved.
As the world pauses for COVID-19, it is more important than ever to raise awareness, push for new legislation, and insist on continued investment in rare disease research. In short, we need to Fast Forward for RARE.
But don’t take our word for it. Listen to the advocates – strong and courageous people who live with rare disorders, care for family members, lead and serve patient communities, and honor the lives of angels. People with diverse experiences and names, including Tanya, Heather, Netanel, Lynn, Chris, Eddie, Felicia, Gabriel, and many more.
This year for the first time, SmithSolve partnered with Rare Disease Legislative Associates to introduce Fast Forward for RARE, a new video suite created to prepare rare disease advocates to tell their story with impact and inspire action. We shared lessons gained from leading the “practice your pitch” workshop at each of the last four legislative conferences. Advocates had the opportunity to practice their pitch on camera, receive personalized feedback, and apply what they learned on Capitol Hill and beyond.
Now, you can listen to their stories by visiting FastForwardforRARE.org. Hearing directly from rare disease advocates is a powerful experience that reminds us that living with a rare disease isn’t rare at all. While every person and every disorder is unique, collectively more than 350 million people in the rare disease community worldwide face common challenges.
This year’s Rare Disease Day message is that “Rare is many. Rare is strong. Rare is proud.” We are proud beyond words to be a part of such a driven community. Seeing rare disease advocates in action inspires our work throughout the year.
Interested in joining the conversation? Register for RARE Across America to enroll in the Fast Forward for RARE webinar on Tues., July 21, 2020 at 3:00 p.m. ET by visiting https://rareadvocates.org/rareacrossamerica/. You’ll receive tips and coaching to help you share your story with impact and inspire action. Together we can advance important legislation, improve understanding of rare diseases, and support development of new treatments.
To learn more, visit www.FastForwardforRARE.com.
