Archived Events

2022 RARE Patient Advocacy Summt

In September 2022, Global Genes convened rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies to connect and inspire collaboration.

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Rare Life. Bonded Together

This is an unparalleled opportunity to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees with insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can take home and implement immediately to accelerate change. In 2022, the Summit was a hybrid event, with meetings, workshops, and sessions held in San Diego, California and educational sessions live-streamed online.

Keep scrolling to see more content from the 2022 event, including videos of the sessions, and key takeaways from each session.

Watch Sessions from the 2022 RARE Patient Advocacy Summit

Undiagnosed? Misdiagnosed? Issues Related to Obtaining a Genetic Diagnosis

How and when do you seek a genetic test, what to do if the result is inconclusive, when to retest, and can a genetic counselor advocate for you?

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Mental Health for RARE Adults

This session explores how we can normalize and increase access to mental health care for adults diagnosed with RARE disease?

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The Past and Future of Patient-Centered Rare Disease Innovation

Biotech veteran Jim Geraghty spoke about the journey that therapies for rare diseases has taken, and what is in store for the future of rare disease therapies, and how patient involvement has and can make a difference.

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Caregiver Track Sessions from the 2022 RARE Patient Advocacy Summit

The RARE Siblings Experience

Sometimes called glass children, the siblings of a person with a RARE disease have unique demands put on them. How can you best care for a sibling or be that sibling?

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Guide to Palliative Care and Complex Care

When RARE patients with complex medical issues need palliative care or complex care, a coordinator can make a huge
difference. Learn the difference between the two and how to add one to your care team.

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Grandparents as Caregivers

Building a firm foundation for your research program helps avoid wasted time, money, and effort. Why is the data collected and produced by basic research important? What role does it play in driving research strategies?

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Preventing Caregiver Burnout

RARE Parents talk about how we can avoid the burnout and depression that may come from caregiving.

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Grieving as a Community

When someone in your same disease community passes on, how do you lead support for that family and for all your members?

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Skill Building Track Sessions from the 2022 RARE Patient Advocacy Summit

Fundraising Do’s & Don’ts

Learn about setting goals for fundraising when asking for funds, different ways to seek funds, what an organization needs to do before starting the fundraising efforts.

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Data Tech For RARE Care

How can technology help with rare disease care? End users of PHI apps and tools speak on what data you should want to collect and the importance of data.

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How to Be a Podcast Guest

This session covers how podcasters got their start, how podcasting helped them and their community, and how to be a great podcast guest.

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Finding & Retaining Volunteers

Sometimes getting the volunteers is the easy part, but keeping them can be trickier. This session provides tips on how to engage your team of volunteers to keep them coming back.

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Watch the 2022 Highlight Video

Looking Back at the 2022 RARE Patient Advocacy Summit

2022 Recap

Check out some stats from our event this year.

2022 RARE Patient Advocacy Summit Stats