Share4Rare toolkit for patient advocacy

Patient advocacy deals with giving a voice to a spectrum of healthcare stakeholders, which include patients, survivors of illness and caregivers. An advocate can take more than one form, including as an individual, an organisation or both. The target of an advocate’s activity concerns a certain disorder or group of disorders and can include all or part of the patient community. The rare disease patients are facing even more challenges in their advocacy due to the limited and fragment patient numbers.

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A wide-ranging number of activities fall under the definition of patient advocacy. These include but are not limited to:

• Defending the rights of a patient
• Education of patients and their families
• Education of their healthcare providers
• Support and information
• Collaboration and sharing
• Patient representation
• Building awareness
• Access to healthcare
• Access to medicines and technologies

Advocates act as the representatives of patient groups in order to raise the issues they face on a wider platform. Patient advocates might liaise with political bodies, healthcare entities, inform the public and work with healthcare professionals, education and medical and pharmaceutical research communities.

Their role is wide-reaching and encompasses many areas. It acts as the connecting link between groups of diseases, healthcare professionals, patients and survivors, medical researchers and political legislators.