EP26: Patient-Centric Opportunities in July for Advocacy, Support, and Awareness + Your TL;DR Wrap-up

In this episode, we dive into a range of events, discussing various awareness days taking place in July, and highlighting opportunities that focus on patient-centered initiatives for rare diseases.

We also discuss various awareness days in July, including Chronic Disease Day, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjögren's Day, #CTNNB1 Awareness, Legg-Calve-Perthes Awareness Day, Jansen’s Disease Awareness Day, and Acute Necrotizing Encephalopathy (ANE) Awareness Day. We highlight the finalists for the Social Health Awards and provide updates on the Xcelerate RARE challenge, Well-CAST Caregiver Support program, and Patient Office Hours.

Source links:

Fragile X Syndrome: fragilex.org
CDC Mental Health Awareness: cdc.gov
Sarcoma Awareness: surgicaloncology.co.uk
Chronic Disease Day: aha.org, ec.europa.eu
Glioblastoma Awareness: glioblastomafoundation.org
World Castleman Disease Day: castleman.org
Jansen’s Disease Awareness Day: thejansensfoundation.org
Rare Disease Clinical Trial Network: https://twitter.com/rare_trial
Social Health Awards Finalists: wegohealth.com
Well-CAST Caregiver Support: kelleherlab.weebly.com
Patient Office Hours: rarecommunity.org
Patient-Centricity in Clinical Trials: PMLive website, Nature journal website
Conferences: Social Health Network/Health Union Conexxion Conference, health-union.com

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