Webinars

Webinar

The Future of The Rare Disease Community

In the age of digital connection, young people are building vibrant, supportive rare disease communities in ways that previous generations may not immediately recognize. Utilizing technology, social media, and innovative approaches, they are creating spaces for shared experiences, resources, scientific advancement, and advocacy that transcend geographical and generational barriers.

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Webinar

Unlocking Healthcare Access for Rare Disease

Health care access is a global challenge, compounded for rare diseases in which diagnostic and treatment options may be both geographically and financially out of reach for many patients. Yet access is attainable, and in this panel discussion we will explore strategies for overcoming obstacles to access by hearing…

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Webinar

Keys to success: Unlocking health care access for rare disease

This webinar aims to share insights, experiences, and best practices in navigating the complexities of health care systems to ensure equitable access for rare disease patients

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Webinar

Standing out in the storm: Caregiving in rare disease

This webinar aims to provide caregivers with valuable knowledge and strategies to navigate the complexities of caregiving in the context of rare diseases.

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Webinar

Blooming against odds: Successfully navigating mental health in rare disease

The discussion aims to empower individuals with rare diseases to not only survive but thrive in their journey towards mental health and well-being.

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Webinar

Advocacy in rare disease: Taking Care of Caregivers

In this panel discussion, participants will explore advocacy efforts aimed at easing the burden of caregiving for rare diseases.

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Webinar

Advocacy in rare disease: Driving Technology Advances

In this panel discussion, participants will discuss how technology advancements could bring new therapies.

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Webinar

Advocacy in rare disease: Working the Regulatory Angle

In this panel discussion, participants will discuss how to navigate the notoriously complex regulatory angle

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Webinar

Advocacy in rare disease: Closing the funding gap

In this panel discussion, participants will discuss how closing the funding gap in rare diseases requires a multi-faceted approach.

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Webinar

Advocacy in rare disease: Crafting the public narrative

In this webinar, we invited experts in communication, public relations, and influencing to discuss strategies and tactics to advance advocacy for rare disease

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Webinar

Advocacy in rare disease: Surveying the landscape

In this first webinar (free) in the 2023 series on advocacy in rare disease, we examine the advocacy landscape : advocates, organizations, resources, success.

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Webinar

Humanizing the support of patients living with a Rare Disease

For this last 2022 webinar, our guests will share ideas on how to improve the humanistic support of patients with rare diseases and their families

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