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.
View AgendaRare 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?
View SessionMental Health for RARE Adults
This session explores how we can normalize and increase access to mental health care for adults diagnosed with RARE disease?
View SessionThe 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.
View SessionCaregiver 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?
View SessionGuide 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.
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?
View SessionPreventing Caregiver Burnout
RARE Parents talk about how we can avoid the burnout and depression that may come from caregiving.
View SessionGrieving 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?
View SessionSkill 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.
View SessionData 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.
View SessionHow 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.
View SessionFinding & 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.
View Session