Practical learning resources for patient advocates
Patient advocates play an important role in ensuring that the experiences and priorities of people living with rare diseases are heard. Developing skills in advocacy, communication, research and organisational management can help advocates represent their communities and work more effectively with healthcare professionals, researchers and policymakers.
We have compiled a selection of training courses, learning resources and useful guides to support patient advocates and patient organisations around the world. Choose a topic below to find resources that match your interests and needs.
Develop your advocacy skills, build leadership capabilities and learn how to represent the needs and priorities of your community.
Learn about communicating with different audiences, raising awareness of rare diseases and using digital channels to engage your community.
Find resources to help establish, manage and strengthen patient organisations, including guidance on governance, fundraising and collaboration.
Build your understanding of rare disease research, medicines development, clinical trials and opportunities for patient involvement in research.
Explore learning opportunities on healthcare policy, health technology assessment, access to medicines and the role of patient advocates in healthcare decision-making.
Explore learning opportunities from trusted organisations supporting the rare disease community.
A wide range of online courses for rare disease advocates covering leadership, research, digital skills, policy and more.
Free e-learning platform with courses, guides and videos on communications, fundraising. research and patient group development.
Learning opportunities for patient advocates, including introductory advocacy training for young people.
Youth Leadership Programme to empower young people in the rare disease community through mentoring, capacity building and training.
Our guide "Free Online Training Available for Patient Advocates" brings together a range of training courses, learning resources and useful publications.
We will continue to identify and share useful training opportunities and learning materials for patient advocates and organisations working with the Gaucher community.
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