Capacity Building Resources
Patient organization management
Patient Organization Startup and managements – general
- So You Think You Want To Start A Nonprofit (GlobalGenes)
- Starting A Nonprofit: The First Steps (GlobalGenes)
- Leading a Nonprofit Organization (Strengthening Nonprofits)
- The NGO Handbook ()
Project management
Media, social media
Managing the data (membership, CRM and registries)
External communications, PR, GR
- Building Relationships with Your Representatives (GlobalGenes)
- The Added Value of Patient Organisations (EPF)
Working with HCP
Working with pharma
- EFPIA Code of Practice on Relationships between the Pharmaceutical Industry and Patient Organisations (EFPIA)
- Roche Working with patient groups: Good practice guidelines (Roche)
- Engagement with Patient Organisations (GSK)
Legal issues and compliance
Fundraising
- Finding your Fundraising Strategy (GlobalGenes)
- 5 Essential Tips & Tools For Effective Fundraising (GlobalGenes)
Understanding the industry
From Molecules to Medicine (GlobalGenes)
- Clinical Research
- How are new drugs and therapies developed?
- How patients can share their voices throughout the drug development process
Disease-related information
- Keys To Help Rare Disease Patients Ensure A Successful Surgery (GlobalGenes)
- Delays in Diagnosis of Pituitary Tumors Why They Happen and Steps to Prevent Them (PNA webinars)
- Pituitary Centers of Excellence (PNA webinars)
- Management Options for Pituitary Tumors (PNA webinars)
- Headaches and Pituitary Tumors (PNA webinars)
and many other webinars from PNA webinars
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