Advocacy in rare disease: Taking care of caregivers invited panel discussion

Description

The Covid-19 pandemic brought into focus for many the enormous stress and sacrifice experienced by caregivers. Those caring for individuals with rare diseases have long faced challenges, from navigating complex medical systems to providing emotional support for their loved ones. Many caregivers also feel the need to act as advocates for their loved ones, working with governments, patient groups, and other stakeholders to try to improve the lives of those under their care. Too often, the plight of the caregiver themself is overlooked, but advocates are working to make change. In this panel discussion, we will explore advocacy efforts aimed at easing the burden of caregiving for rare diseases.

In this webinar, participants will learn about:
The unique challenges caregivers of people with rare diseases face,
Caregiver advocacy action from outside the rare disease space, and
Success stories about advocacy efforts that are easing the burden of caregiving in rare diseases.

Period	11 Oct 2023
Held at	American Association for the Advancement of Science, United States, District of Columbia
Degree of Recognition	International