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TREND Special Series: Cross-Community Collaboration and Discoveries

Social Media Series
8/13/2021

In February 2020, TREND presented a poster at NIH Day during Rare Disease Week on Capitol Hill titled: Insights From Closed Social Networks Advance the Understanding of Commonalities Between Rare Diseases. This poster summarized conversation data from twelve rare disease communities (chromosome 8p disorders, chronic urticaria, congenital rubella syndrome, cutis marmorata telangiectatica congenita, epidermolysis bullosa, GM1 and GM2 gangliosidoses and Canavan, Hypoxic-ischemic encephalopathy, PANS and PANDAS, Pitt-Hopkins syndrome, pituitary tumor, Prader-Willi syndrome, Wolf-Hirschhorn syndrome). Our analysis highlighted burdens of disease shared between these disease states including pain, anxiety, fatigue, and infection.

In December 2020, TREND co-hosted a Summit on Sleep Disruption organized by Harmony Biosciences that convened advocates from seven rare disease communities (Angelman syndrome, idiopathic hypersomnia, Kleine-Levin syndrome, myotonic dystrophy, narcolepsy, Prader-Willi syndrome, and Smith- Magenis syndrome).

Summit participants included:

  • Terri Jo Bichell, PhD, MPH, Executive Director, COMBINEDBrain
  • Casey Gorman, Executive Director, Parents and Researchers Interested in Smith-Magenis Syndrome
  • Lindsay Jesteadt, PhD, Director of Development, Wake Up Narcolepsy
  • Jeremy Kelly, Board Chair & Lifetime Trustee, Myotonic Dystrophy Foundation
  • Erica Kelly, person with myotonic dystrophy
  • Rebecca King, Board Member, Hypersomnia Foundation
  • Steve Maier, President, KLS Foundation Board of Directors
  • Sharon O’Shaughnessy, Vice President, Board of Directors, Narcolepsy Network
  • Maria Picone, Co-Founder & CEO, Trend Community
  • Lara Pullen, PhD, President and Co-Founder, Chion Foundation
  • Paige Rivard, Chief Executive Officer, Prader-Willi Syndrome Association USA
  • Theresa Strong, PhD, Director of Research Programs, Foundation for Prader-Willi Research

Participants shared their communities’ experiences related to sleep disruption, including behavioral challenges, reduced social and cognitive abilities, increased comorbidities, increased anxiety and depression, and an overall reduced health-related quality of life.

The summit highlighted challenges with the diagnosis and treatment of sleep-wake instability in comparison with symptoms more commonly associated with their respective rare diseases. Read the white paper for a full account of this summit.

These projects demonstrate the power of cross-community collaboration to advance the understanding of rare disease symptoms. In the coming months this special series will report on TREND’s cross-disease initiatives and discoveries.

Maria Picone
Maria PiconeCo-Founder/CEO
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