TREND’s 2021 Annual Letter and Citizen Scientist Announcement

Maria Picone
Maria Picone

Dear Community,

Despite some setbacks, disappointments, and unforeseen challenges, 2021 was a year of unprecedented growth for TREND.

To kick-off off the year, we matched with Takeda Pharmaceutical Company Limited (“Takeda”) through the MassChallenge HealthTech program to advance Takeda’s shared commitment to fighting for rare disease patient communities and bringing treatments to patients faster.

With generous sponsorship from Harmony Biosciences and Takeda, and in partnership with PWN4PWN, Wake Up Narcolepsy, Sleep Consortium, and community advocate, Matt Horsnell, we launched the Narcolepsy Community Voice Report. This was one of many initiatives to better understand how sleep-wake instability impacts people living with rare disease. With continued support from Harmony Biosciences and rare disease advocates representing a variety of rare diseases with reported complications around sleep, we convened a sleep summit to discuss the role that excessive daytime sleepiness (EDS) plays in their respective patient communities. We also completed three manuscripts pending review for publication and met with the Food and Drug Administration (FDA) to explore the feasibility of a basket trial to study sleep-wake instability across multiple rare disorders (a white paper summarizing this meeting will be published later this month).

This year, we are presenting the TREND Community Citizen Scientist Award to Sleep Consortium Co-Founders, Claire Crisp and Lindsay Jesteadt, for their pledge to accelerate next-generation therapy development for central disorders of hypersomnolence.

In partnership with the Fabry Disease Info and Support Group, an online community for individuals living with Fabry Disease, and with sponsorship from Chiesi Global Rare Diseases we also launched the Fabry Disease Community Voice Report. In 2022 we will present a poster at the WORLDSymposium and launch a Data Exploration to further explore mental health-related challenges and treatment impact on this community.

In collaboration with Kiniksa Pharmaceuticals and Dr. Chadi Alraies, we presented a poster titled Amplifying Patient Voices Using the Rapid Method of Social Listening: Pericarditis at the NORD Breakthrough Summit.

We are grateful for our partners who share our unwavering commitment to make the world a better place for people living with rare and chronic conditions: COMBINEDBrain, Rare Revolution, Angel Aid, PWN4PWN, Sleep Consortium, OrphanCures, and RealiTi (formerly RareiTi.

With the addition of Colton and Max to our technology team, community bloggers (Matt, Rachelle, and Justice), and our many community stakeholders sharing their collective voices, our analytics engine, Krystie, is producing deep and powerful insights that each day bring us a little closer to achieving our vision of revolutionizing the world’s understanding of diseases. We welcome Horizon Therapeutics and Cogent Biosciences to the TREND Community and thank them for amplifying the voices of people living with rare and chronic conditions.

May this year bring you new opportunities and hope!

Maria Picone, Co-Founder and CEO
Christopher DeFelice, Co-Founder and CTO