31:34
Financial Assistance for Rare Disease part 1
56:24
Showing Up 101 with Myra Sack - Dealing with Grief
01:10:21
RARE Storytelling Workshop 20240716
53:51
Integrating Clinical & Patient Reported Data: RARE-X Exchange
41:05
Unlocking Insights Together: The Power of Data Collaboration -- RARE-X Exchange
45:32
Partnerships in Action: RARE-X Exchange session
07:05
Jas Madhavan RARE Pride Queer Conversation
04:41
Daniel Price RARE Pride Queer Conversation
05:48
André Marcel Harris RARE Pride Queer Conversation
04:37
Grayson Schultz RARE Pride Queer Conversation
05:50
Nate Milam RARE Pride Queer Conversation 2024
06:02
Cory Lewis RARE Pride Queer Conversation 2024
03:08
Maria and Julia talk about Thalassemia
38:27
Rare Storytelling Through Instagram - pt 2
30:22
Rare Storytelling Through Instagram - pt 1
04:12
RARE Compassion Program Testimonials
55:56
Lunch & Learn: Defining Your Underserved & Underrepresented Patient Population
01:19:08
Lunch & Learn: Board Of Directors 101 with Anne Gingerich
04:00
Charlene Son Rigby speaks at The White House during Rare Disease Week 2024
04:10
Global Genes' Mackenzie Abramson takes on Washington D.C. at Rare Disease Week - Part 2
06:50
Global Genes' Mackenzie Abramson takes on Washington D.C. at Rare Disease Week - Part 1
01:10:12
RAREly Told Stories Workshop
01:36
RTS How to Fix Vertical Videos
02:03
Wiley’s Rare Story Angelman Syndrome
02:02
RTS Kimberly Warner - share the hard parts
01:30
RTS Effie Parks on Miss Diagnosis
02:34
Zebra Tales
43:37
RARE Advocacy Summit 2023: Beginner’s Guide to Community Activation
29:55
2023 Champions of Hope Celebration & Recognition Ceremony
41:27
RARE Advocacy Summit 2023: Spinal Muscular Atrophy Case Study
47:47
RARE Advocacy Summit 2023 -- Power of Partnering: Zander Translational Research Neuroscience Center
45:46
RARE Advocacy Summit 2023 -- Thinking Like a Researcher: Disease Biology 101
45:26
RARE Advocacy Summit 2023: Small Molecules, Drug Repurposing and Biologics
26:52
RARE Advocacy Summit 2023 -- Pre-Clinical Research: Why and When to Invest
46:08
RARE Advocacy Summit 2023: Crafting a Data Sharing Strategy
47:51
RARE Advocacy Summit 2023 -- Power of Partnering: Children’s Hospital Colorado
44:33
RARE Advocacy Summit 2023: Gene Replacement and Gene Editing Therapies
44:42
RARE Advocacy Summit 2023: RNA Therapies
03:56
Highlights from the 2023 RARE Health Equity Forum
45:37
RARE Advocacy Summit 2023: Developing Scientific Expertise to Drive Research Strategy
46:54
RARE Advocacy Summit 2023: Using Data Collection to Improve Outcomes
43:22
RARE Advocacy Summit 2023: Becoming Clinical Trial Ready
05:36
Health Equity Forum 2023: Closing Remarks
53:55
Health Equity Forum 2023: Advancing Hispanic Inclusion in Rare Disease Advocacy and Research
31:22
Health Equity Forum 2023: Leveraging Underutilized Health Services to Support Underserved
06:18
Health Equity Forum 2023: Welcome Remarks
27:16
Open Science Data Challenge Presentation of Winners
34:55
Health Equity Forum Keynote 2023: Racism A Historical Foundation for Systemic Disparities
56:59
Health Equity Forum 2023: Engagement Strategies -- How to Find & Leverage Partnerships
52:53
Health Equity Forum 2023: The Intersectionality of Identity, Culture & the Rare Disease Experience
47:34
RARE Advocacy Summit 2023 - Create Your Strategy: The RARE Research Roadmap
28:18
RARE Advocacy Summit 2023: Expanding Your Global Reach
02:31
Global Genes RARE Advocacy Summit 2023
46:21
2023 RARE Advocacy Summit: Coping with the Challenge of Rare Disease - With or Without a Diagnosis
42:53
RARE Advocacy Summit 2023: How Companies Decide Which Therapies to Pursue
57:01
RARE Advocacy Summit 2023: It’s All of Us Against the Disease
01:00:06
RARE Advocacy Summit 2023: Strengthened by Our Past, Working Together to Create Our Future
51:05
RARE Advocacy Summit 2023 -- Rebel Health: How Rare Disease Communities Lead the Revolution
45:06
RARE Advocacy Summit 2023: Managing Life Without a Diagnosis
44:49
RARE Advocacy Summit: The Cost of Delayed Diagnosis
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About
Rare diseases are defined as conditions that affect fewer than 200,000 patients in the United States, or one in 2000 patients in Europe. Approximately 1 in 10 Americans, 30 million people in the United States, and 400 million people globally are affected by a rare disease. Over 7,000 distinct rare diseases exist
Global Genes is a 501(c)(3) nonprofit organization that connects, empowers and inspires the rare disease community, with the ultimate goal of eliminating the burdens of rare disease for patients and families everywhere. We provide hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government and other stakeholders, share data and experiences, and stand up, stand out and become effective advocates on their own behalf. Visit globalgenes.org to get involved today.
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