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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