• 21May

    Share4Rare toolkit for rare advocacy

    This practical toolkit shares best practices and tools that advocates have used to support innovation and offers practical advice on how to make a difference for rare disease patients.

    Patient advocates give a voice to a spectrum of healthcare stakeholders, which include patients, survivors of illness and caregivers.

    An advocate can be shaped as an individual, an organization or both. The target of an advocate’s activity concerns a certain disease or group of diseases and can include all or part of the patient community.

    Rare disease patients are facing even more challenges in their advocacy due to the limited and fragment patient numbers.

    With this toolkit, Share4Rare aims to create a practical resource to help plan, build, test, communicate and launch a new advocacy effort.

    This extensive toolkit is a result of many years of advocacy experience in the rare disease field of all Share4Rare partners and covers a range of topics such as strategy, communication, research and education to help rare disease families access the services and support they need.