Канал: Global Genes - Allies in Rare Disease

RARE Storytelling Workshop 20240716

RARE Storytelling Workshop 20240716

Integrating Clinical & Patient Reported Data: RARE-X Exchange

Integrating Clinical & Patient Reported Data: RARE-X Exchange

Unlocking Insights Together: The Power of Data Collaboration -- RARE-X Exchange

Unlocking Insights Together: The Power of Data Collaboration -- RARE-X Exchange

Partnerships in Action: RARE-X Exchange session

Partnerships in Action: RARE-X Exchange session

Jas Madhavan RARE Pride Queer Conversation

Jas Madhavan RARE Pride Queer Conversation

Daniel Price RARE Pride Queer Conversation

Daniel Price RARE Pride Queer Conversation

André Marcel Harris RARE Pride Queer Conversation

André Marcel Harris RARE Pride Queer Conversation

Grayson Schultz RARE Pride Queer Conversation

Grayson Schultz RARE Pride Queer Conversation

Nate Milam RARE Pride Queer Conversation 2024

Nate Milam RARE Pride Queer Conversation 2024

Cory Lewis RARE Pride Queer Conversation 2024

Cory Lewis RARE Pride Queer Conversation 2024

Maria and Julia talk about Thalassemia

Maria and Julia talk about Thalassemia

Rare Storytelling Through Instagram - pt 2

Rare Storytelling Through Instagram - pt 2

Rare Storytelling Through Instagram - pt 1

Rare Storytelling Through Instagram - pt 1

RARE Compassion Program Testimonials

RARE Compassion Program Testimonials

Lunch & Learn: Defining Your Underserved & Underrepresented Patient Population

Lunch & Learn: Defining Your Underserved & Underrepresented Patient Population

Lunch & Learn: Board Of Directors 101 with Anne Gingerich

Lunch & Learn: Board Of Directors 101 with Anne Gingerich

Charlene Son Rigby speaks at The White House during Rare Disease Week 2024

Charlene Son Rigby speaks at The White House during Rare Disease Week 2024

Global Genes at Rare Disease Week 2024

Global Genes at Rare Disease Week 2024

Global Genes' Mackenzie Abramson takes on Washington D.C. at Rare Disease Week - Part 2

Global Genes' Mackenzie Abramson takes on Washington D.C. at Rare Disease Week - Part 2

Global Genes' Mackenzie Abramson takes on Washington D.C. at Rare Disease Week - Part 1

Global Genes' Mackenzie Abramson takes on Washington D.C. at Rare Disease Week - Part 1

RAREly Told Stories Workshop

RAREly Told Stories Workshop

RTS How to Fix Vertical Videos

RTS How to Fix Vertical Videos

Wiley’s Rare Story Angelman Syndrome

Wiley’s Rare Story Angelman Syndrome

RTS Kimberly Warner - share the hard parts

RTS Kimberly Warner - share the hard parts

RTS Effie Parks on Miss Diagnosis

RTS Effie Parks on Miss Diagnosis

Zebra Tales

Zebra Tales

RARE Advocacy Summit 2023: Beginner’s Guide to Community Activation

RARE Advocacy Summit 2023: Beginner’s Guide to Community Activation

2023 Champions of Hope Celebration & Recognition Ceremony

2023 Champions of Hope Celebration & Recognition Ceremony

RARE Advocacy Summit 2023: Spinal Muscular Atrophy Case Study

RARE Advocacy Summit 2023: Spinal Muscular Atrophy Case Study

RARE Advocacy Summit 2023 -- Power of Partnering: Zander Translational Research Neuroscience Center

RARE Advocacy Summit 2023 -- Power of Partnering: Zander Translational Research Neuroscience Center

RARE Advocacy Summit 2023 -- Thinking Like a Researcher: Disease Biology 101

RARE Advocacy Summit 2023 -- Thinking Like a Researcher: Disease Biology 101

RARE Advocacy Summit 2023: Small Molecules, Drug Repurposing and Biologics

RARE Advocacy Summit 2023: Small Molecules, Drug Repurposing and Biologics

RARE Advocacy Summit 2023 -- Pre-Clinical Research: Why and When to Invest

RARE Advocacy Summit 2023 -- Pre-Clinical Research: Why and When to Invest

RARE Advocacy Summit 2023: Crafting a Data Sharing Strategy

RARE Advocacy Summit 2023: Crafting a Data Sharing Strategy

RARE Advocacy Summit 2023 -- Power of Partnering: Children’s Hospital Colorado

RARE Advocacy Summit 2023 -- Power of Partnering: Children’s Hospital Colorado

RARE Advocacy Summit 2023: Gene Replacement and Gene Editing Therapies

RARE Advocacy Summit 2023: Gene Replacement and Gene Editing Therapies

RARE Advocacy Summit 2023: RNA Therapies

RARE Advocacy Summit 2023: RNA Therapies

Highlights from the 2023 RARE Health Equity Forum

Highlights from the 2023 RARE Health Equity Forum

RARE Advocacy Summit 2023: Developing Scientific Expertise to Drive Research Strategy

RARE Advocacy Summit 2023: Developing Scientific Expertise to Drive Research Strategy

RARE Advocacy Summit 2023: Using Data Collection to Improve Outcomes

RARE Advocacy Summit 2023: Using Data Collection to Improve Outcomes

RARE Advocacy Summit 2023: Becoming Clinical Trial Ready

RARE Advocacy Summit 2023: Becoming Clinical Trial Ready

Health Equity Forum 2023: Closing Remarks

Health Equity Forum 2023: Closing Remarks

Health Equity Forum 2023: Advancing Hispanic Inclusion in Rare Disease Advocacy and Research

Health Equity Forum 2023: Advancing Hispanic Inclusion in Rare Disease Advocacy and Research

Health Equity Forum 2023: Leveraging Underutilized Health Services to Support Underserved

Health Equity Forum 2023: Leveraging Underutilized Health Services to Support Underserved

Health Equity Forum 2023: Welcome Remarks

Health Equity Forum 2023: Welcome Remarks

Open Science Data Challenge Presentation of Winners

Open Science Data Challenge Presentation of Winners

Health Equity Forum Keynote 2023: Racism A Historical Foundation for Systemic Disparities

Health Equity Forum Keynote 2023: Racism A Historical Foundation for Systemic Disparities

Health Equity Forum 2023: Engagement Strategies -- How to Find & Leverage Partnerships

Health Equity Forum 2023: Engagement Strategies -- How to Find & Leverage Partnerships

Health Equity Forum 2023: The Intersectionality of Identity, Culture & the Rare Disease Experience

Health Equity Forum 2023: The Intersectionality of Identity, Culture & the Rare Disease Experience

RARE Advocacy Summit 2023 - Create Your Strategy: The RARE Research Roadmap

RARE Advocacy Summit 2023 - Create Your Strategy: The RARE Research Roadmap

RARE Advocacy Summit 2023: Expanding Your Global Reach

RARE Advocacy Summit 2023: Expanding Your Global Reach

Global Genes RARE Advocacy Summit 2023

Global Genes RARE Advocacy Summit 2023

2023 RARE Advocacy Summit: Coping with the Challenge of Rare Disease - With or Without a Diagnosis

2023 RARE Advocacy Summit: Coping with the Challenge of Rare Disease - With or Without a Diagnosis

RARE Advocacy Summit 2023: How Companies Decide Which Therapies to Pursue

RARE Advocacy Summit 2023: How Companies Decide Which Therapies to Pursue

RARE Advocacy Summit 2023: It’s All of Us Against the Disease

RARE Advocacy Summit 2023: It’s All of Us Against the Disease

RARE Advocacy Summit 2023: Strengthened by Our Past, Working Together to Create Our Future

RARE Advocacy Summit 2023: Strengthened by Our Past, Working Together to Create Our Future

RARE Advocacy Summit 2023 -- Rebel Health: How Rare Disease Communities Lead the Revolution

RARE Advocacy Summit 2023 -- Rebel Health: How Rare Disease Communities Lead the Revolution

RARE Advocacy Summit 2023: Managing Life Without a Diagnosis

RARE Advocacy Summit 2023: Managing Life Without a Diagnosis

RARE Advocacy Summit: The Cost of Delayed Diagnosis

RARE Advocacy Summit: The Cost of Delayed Diagnosis

RARE Advocacy Summit 2023: Emerging Rare Policy Issues

RARE Advocacy Summit 2023: Emerging Rare Policy Issues

RARE Advocacy Summit: Emerging Opportunities to Accelerate Research Through Community Collaborations

RARE Advocacy Summit: Emerging Opportunities to Accelerate Research Through Community Collaborations

RARE Advocacy Summit 2023: Activating Advocacy for Kids, Teens and Youth

RARE Advocacy Summit 2023: Activating Advocacy for Kids, Teens and Youth

RARE Advocacy Summit 2023: I’m an Expert, Too! Communicating with HCPs

RARE Advocacy Summit 2023: I’m an Expert, Too! Communicating with HCPs

RARE Advocacy Summit 2023: Compelling New Models for Patient Engagement and Trial Participation

RARE Advocacy Summit 2023: Compelling New Models for Patient Engagement and Trial Participation

RARE Advocacy Summit 2023: Pediatric to Adult Healthcare Transition

RARE Advocacy Summit 2023: Pediatric to Adult Healthcare Transition

RARE Advocacy Summit 2023: Coordinating Complex Care

RARE Advocacy Summit 2023: Coordinating Complex Care

RARE Advocacy Summit 2023 -- We the Scientists: How Patients Are Driving Research

RARE Advocacy Summit 2023 -- We the Scientists: How Patients Are Driving Research

RARE Advocacy Summit 2023: Grieving Diagnosis, Lack of Diagnosis and Loss

RARE Advocacy Summit 2023: Grieving Diagnosis, Lack of Diagnosis and Loss

RARE Advocacy Summit 2023: Financial Support for Your Community Members

RARE Advocacy Summit 2023: Financial Support for Your Community Members

RARE Advocacy Summit 2023: Working Nicely in the Same Sandbox

RARE Advocacy Summit 2023: Working Nicely in the Same Sandbox

RARE Advocacy Summit 2023: Develop a Long-Term Growth Strategy

RARE Advocacy Summit 2023: Develop a Long-Term Growth Strategy

RARE Advocacy Summit 2023: Using Data Collection to Improve Outcomes

RARE Advocacy Summit 2023: Using Data Collection to Improve Outcomes

RARE Advocacy Summit 2023: Why Genetic and Genomic Testing is Key to Increased Diagnosis

RARE Advocacy Summit 2023: Why Genetic and Genomic Testing is Key to Increased Diagnosis

RARE Advocacy Summit 2023: Supporting Your Rare Community’s Mental Health

RARE Advocacy Summit 2023: Supporting Your Rare Community’s Mental Health

Neena Nizar on Air Travel for Passengers Using Assistive Devices

Neena Nizar on Air Travel for Passengers Using Assistive Devices

CIRM at Summit

CIRM at Summit

September is Newborn Screening Awareness Month

September is Newborn Screening Awareness Month

Effie Parks - Your Thing in RARE Disease

Effie Parks - Your Thing in RARE Disease

Rarely Told Stories - Dina o Pre Production Part2

Rarely Told Stories - Dina o Pre Production Part2

RarelyTold Stories - Dina on Pre Production Part1

RarelyTold Stories - Dina on Pre Production Part1

RAREly Told Stories - Kimberly Warner - How to shoot on your phone

RAREly Told Stories - Kimberly Warner - How to shoot on your phone

RarelyTold Stories- Lexi How to Edit a Video -RTS

RarelyTold Stories- Lexi How to Edit a Video -RTS

RTS Jon Garcia edit tutorial - short

RTS Jon Garcia edit tutorial - short

Why We Edit - RTS

Why We Edit - RTS

Cory Lewis Talks About Advocating For Himself as a Gay Man Living with a Rare Disease

Cory Lewis Talks About Advocating For Himself as a Gay Man Living with a Rare Disease

Effie on Walmart

Effie on Walmart

Georgene Glass HEF social promo

Georgene Glass HEF social promo

Johanne Laboy Global Genes RARE Health Equity Forum social promo

Johanne Laboy Global Genes RARE Health Equity Forum social promo

Rachel Barron on the importance of attending the Global Genes' RARE Health Equity Forum

Rachel Barron on the importance of attending the Global Genes' RARE Health Equity Forum

Shruti Mitkus on the importance of attending the Global Genes' RARE Health Equity Forum

Shruti Mitkus on the importance of attending the Global Genes' RARE Health Equity Forum

Jenifer Waldrop on the importance of attending the Global Genes' RARE Health Equity Forum

Jenifer Waldrop on the importance of attending the Global Genes' RARE Health Equity Forum

Anne Quinn Young on the importance of attending the Global Genes' RARE Health Equity Forum

Anne Quinn Young on the importance of attending the Global Genes' RARE Health Equity Forum

Daniel DeFabio on the importance of attending the Global Genes RARE Advocacy Summit

Daniel DeFabio on the importance of attending the Global Genes RARE Advocacy Summit

Tameka Diaz on the importance of attending the Global Genes RARE Advocacy Summit

Tameka Diaz on the importance of attending the Global Genes RARE Advocacy Summit

Durhane Wong-Rieger on the importance of attending the Global Genes RARE Advocacy Summit

Durhane Wong-Rieger on the importance of attending the Global Genes RARE Advocacy Summit

Meghan Fox on the importance of attending the Global Genes RARE Advocacy Summit

Meghan Fox on the importance of attending the Global Genes RARE Advocacy Summit

Becky Benson on the importance of attending the Global Genes RARE Advocacy Summit

Becky Benson on the importance of attending the Global Genes RARE Advocacy Summit

How Can Patient Advocates Be Involved in Rare Therapy Development?

How Can Patient Advocates Be Involved in Rare Therapy Development?

How Can Patient Organizations Be Research Ready?

How Can Patient Organizations Be Research Ready?

How Does Global Genes Support Advocates Looking to Expand Research Programs?

How Does Global Genes Support Advocates Looking to Expand Research Programs?

Week in RARE - Global Genes Summit 2023

Week in RARE - Global Genes Summit 2023

Health Equity in Rare Disease

Health Equity in Rare Disease

The Xcelerate RARE: A Rare Disease Open Science Data Challenge

The Xcelerate RARE: A Rare Disease Open Science Data Challenge

RARE Roadmap Route

RARE Roadmap Route

CHAMP1 and Xcelerate RARE: A Rare Disease Open Science Data Challenge

CHAMP1 and Xcelerate RARE: A Rare Disease Open Science Data Challenge

CASK and Xcelerate RARE: Laura Hattersley

CASK and Xcelerate RARE: Laura Hattersley

CACNA1A and Xcelerate RARE - Pangkong Fox

CACNA1A and Xcelerate RARE - Pangkong Fox

WSS and Xcelerate RARE - Annabel Corbett

WSS and Xcelerate RARE - Annabel Corbett

Malan and Xcelerate RARE - Christal Delagrammatikas

Malan and Xcelerate RARE - Christal Delagrammatikas

HUWE1 and Xcelerate RARE - Elizabeth Coulter

HUWE1 and Xcelerate RARE - Elizabeth Coulter

Why Join the Global Advocacy Alliance?

Why Join the Global Advocacy Alliance?

RARE Compassion Program - Demi, Amy & Swathi

RARE Compassion Program - Demi, Amy & Swathi

Data DIY 4 - Session 7: Expanding Your Engagement

Data DIY 4 - Session 7: Expanding Your Engagement

Data DIY 4 - Session 6: What More Can You Do with Data

Data DIY 4 - Session 6: What More Can You Do with Data

Data DIY 4 - Session 5: Drug Repurposing & the Wisdom of Crowds

Data DIY 4 - Session 5: Drug Repurposing & the Wisdom of Crowds

Data DIY 4 - Session 3: Leveraging the Power of Partnership

Data DIY 4 - Session 3: Leveraging the Power of Partnership

Data DIY 2 - Session 7: Choosing a Platform Vendor

Data DIY 2 - Session 7: Choosing a Platform Vendor

Data DIY 4 - Session 4: Funding DIY

Data DIY 4 - Session 4: Funding DIY

Data DIY 4 - Session 2: Refining Your Strategy

Data DIY 4 - Session 2: Refining Your Strategy

Data DIY 4 - Session 1: Welcome and Introduction

Data DIY 4 - Session 1: Welcome and Introduction

Data DIY 2 - Session 6: Patient Focused Drug Development

Data DIY 2 - Session 6: Patient Focused Drug Development

Lunch & Learn: General Info Session With Rare X

Lunch & Learn: General Info Session With Rare X

Data DIY 2 - Session 4: What Does Good Look Like

Data DIY 2 - Session 4: What Does Good Look Like

Data DIY 2 - Session 5: Building Governance Plans From the Ground Up

Data DIY 2 - Session 5: Building Governance Plans From the Ground Up

Data DIY 3 - Session 3: Becoming a Data Steward

Data DIY 3 - Session 3: Becoming a Data Steward

Data DIY 2 - Session 2: The Future of Patient Data Collection Programs

Data DIY 2 - Session 2: The Future of Patient Data Collection Programs

Data DIY 1 - Session 5: The Hows of Data Collection

Data DIY 1 - Session 5: The Hows of Data Collection

Data DIY 2 - Session 1: Welcome and Introduction

Data DIY 2 - Session 1: Welcome and Introduction

Data DIY 1 - Session 4: Data Collection Without a Roadmap

Data DIY 1 - Session 4: Data Collection Without a Roadmap

Data DIY 1 - Session 3: Data Used for Better Clinical Outcomes and Creating Standards of Care

Data DIY 1 - Session 3: Data Used for Better Clinical Outcomes and Creating Standards of Care

Data DIY 1 - Session 2: The Whys of Data Collection

Data DIY 1 - Session 2: The Whys of Data Collection

Data DIY 3 - Session 6: Creating a Global Network

Data DIY 3 - Session 6: Creating a Global Network

Data DIY 3 - Session 4: How NCATS Can Help You Jumpstart Your Research

Data DIY 3 - Session 4: How NCATS Can Help You Jumpstart Your Research

Data DIY 1 - Session 1: Welcome & Intro to Data DIY

Data DIY 1 - Session 1: Welcome & Intro to Data DIY

Data DIY 3 - Session 7 :Using Guerrilla Marketing to Advance Research

Data DIY 3 - Session 7 :Using Guerrilla Marketing to Advance Research

Data DIY 3 - Session 5: Welcome Back

Data DIY 3 - Session 5: Welcome Back

Data DIY 3 - Session 2: The Collaborative Network Approach

Data DIY 3 - Session 2: The Collaborative Network Approach

Data DIY 3 - Session 1: Welcome and Introduction

Data DIY 3 - Session 1: Welcome and Introduction

Data DIY 3 - Session 3: Understanding the Researcher's and Clinician's Points of View

Data DIY 3 - Session 3: Understanding the Researcher's and Clinician's Points of View

Rare Disease Day 2023

Rare Disease Day 2023

You Got This - 2022 RAREly Told Stories

You Got This - 2022 RAREly Told Stories

FAIR ToolKit: Learning About Dalia’s Diagnosis (Jessica Fein)

FAIR ToolKit: Learning About Dalia’s Diagnosis (Jessica Fein)

FAIR ToolKit: How Dalia’s Diagnosis Changed Our Lives (Jessica Fein)

FAIR ToolKit: How Dalia’s Diagnosis Changed Our Lives (Jessica Fein)

FAIR Toolkit: Workplace Benefits (Erin Bradshaw)

FAIR Toolkit: Workplace Benefits (Erin Bradshaw)

FAIR Toolkit: Other Tips on Finding Help & Resources (Erin Bradshaw)

FAIR Toolkit: Other Tips on Finding Help & Resources (Erin Bradshaw)

FAIR Toolkit: Medicare Part D prescription coverage (Erin Bradshaw)

FAIR Toolkit: Medicare Part D prescription coverage (Erin Bradshaw)

FAIR Toolkit: Medicare Advantages or Part C (Erin Bradshaw)

FAIR Toolkit: Medicare Advantages or Part C (Erin Bradshaw)

FAIR Toolkit: How Patient Advocacy Foundation Can Help (Erin Bradshaw)

FAIR Toolkit: How Patient Advocacy Foundation Can Help (Erin Bradshaw)

FAIR Toolkit: Evaluating Your Medicare Plan (Erin Bradshaw)

FAIR Toolkit: Evaluating Your Medicare Plan (Erin Bradshaw)

FAIR Toolkit: Choosing a Medicare Plan (Erin Bradshaw)

FAIR Toolkit: Choosing a Medicare Plan (Erin Bradshaw)

RARE Toolkit: About Erin Bradshaw

RARE Toolkit: About Erin Bradshaw

RARE Toolkit: About Maria Della Rocca

RARE Toolkit: About Maria Della Rocca

RARE Toolkit: Deciding To Have Children When You Have A Rare Disease (Maria Della Rocca)

RARE Toolkit: Deciding To Have Children When You Have A Rare Disease (Maria Della Rocca)

FAIR Toolkit: How Can A Genetic Counselor Help (Maria Della Rocca)

FAIR Toolkit: How Can A Genetic Counselor Help (Maria Della Rocca)

FAIR Toolkit: Global Genes RARE Concierge (Maria Della Rocca)

FAIR Toolkit: Global Genes RARE Concierge (Maria Della Rocca)

FAIR Toolkit: Considering IVF (Maria Della Rocca)

FAIR Toolkit: Considering IVF (Maria Della Rocca)

FAIR Toolkit: Looking For a New Job When You Have a Rare Disease (Dakota Fisher Vance)

FAIR Toolkit: Looking For a New Job When You Have a Rare Disease (Dakota Fisher Vance)

FAIR Toolkit: Disclosing Your Diagnosis To Your Employer/Supervisor (Dakota Fisher Vance)

FAIR Toolkit: Disclosing Your Diagnosis To Your Employer/Supervisor (Dakota Fisher Vance)

FAIR Toolkit: Evaluating Your Employee Benefits Options When Job Hunting (Dakota Fisher Vance)

FAIR Toolkit: Evaluating Your Employee Benefits Options When Job Hunting (Dakota Fisher Vance)

FAIR Toolkit: Applying For Jobs When You’re a Rare Disease Advocate (Dakota Fisher Vance)

FAIR Toolkit: Applying For Jobs When You’re a Rare Disease Advocate (Dakota Fisher Vance)

FAIR Toolkit: About Dakota Fisher Vance

FAIR Toolkit: About Dakota Fisher Vance

FAIR ToolKit: Medicare Disability (Mary Morlino)

FAIR ToolKit: Medicare Disability (Mary Morlino)

FAIR ToolKit: About Mary Morlino

FAIR ToolKit: About Mary Morlino

FAIR ToolKit: What I Wish I Knew (Mary Morlino)

FAIR ToolKit: What I Wish I Knew (Mary Morlino)

FAIR ToolKit: Disabilty Work Credits (Mary Morlino)

FAIR ToolKit: Disabilty Work Credits (Mary Morlino)

FAIR ToolKit: Working while you're on disability (Mary Morlino)

FAIR ToolKit: Working while you're on disability (Mary Morlino)

FAIR ToolKit: Advice When Deciding to Adopt (Jessica Fein)

FAIR ToolKit: Advice When Deciding to Adopt (Jessica Fein)

FAIR ToolKit: Our Adoption Story (Jessica Fein)

FAIR ToolKit: Our Adoption Story (Jessica Fein)

FAIR ToolKit: About Jessica Fein

FAIR ToolKit: About Jessica Fein

Global Genes 2022 Health Equity Summit Highlights

Global Genes 2022 Health Equity Summit Highlights

Lunch & Learn: Defining Your Underserved & Underrepresented Patient Population

Lunch & Learn: Defining Your Underserved & Underrepresented Patient Population

Lunch & Learn: Building Cultural Humility

Lunch & Learn: Building Cultural Humility

RDDS Industry Session: Treating Underserved Patient Populations

RDDS Industry Session: Treating Underserved Patient Populations

RDDS Industry Session: Beyond Gene Therapy

RDDS Industry Session: Beyond Gene Therapy

RDDS Fireside Chat: A Novel Framework For Improving Rare & Orphan Life Cycle Development

RDDS Fireside Chat: A Novel Framework For Improving Rare & Orphan Life Cycle Development

RDDS Fireside Chat: What Can We Do Together?

RDDS Fireside Chat: What Can We Do Together?

RDDS Fireside Chat: What are the Keys to Accelerating Rare Disease Research?

RDDS Fireside Chat: What are the Keys to Accelerating Rare Disease Research?

Rare Drug Development Symposium 2022 Highlights

Rare Drug Development Symposium 2022 Highlights

2021 RARE Health Equity Summit

2021 RARE Health Equity Summit

Know Your Family History - Barbara Harrison

Know Your Family History - Barbara Harrison

Know Your Family History - Garfield Clunie, MD

Know Your Family History - Garfield Clunie, MD

Conozca Su Historia Familiar - Maria Decavi

Conozca Su Historia Familiar - Maria Decavi

Conozca Su Historia Familiar - Susanna Hunanyan

Conozca Su Historia Familiar - Susanna Hunanyan

Know Your Family History - Sarita Edwards

Know Your Family History - Sarita Edwards

Know Your Family History - Elle Cole

Know Your Family History - Elle Cole

Know Your Family History - Zarifa Roberson

Know Your Family History - Zarifa Roberson

Conozca Su Historia Familiar - Maria Della Rocca

Conozca Su Historia Familiar - Maria Della Rocca

Conozca Su Historia Familiar - Riccardo Correa, MD

Conozca Su Historia Familiar - Riccardo Correa, MD

Global Genes Ukraine Rare Relief Project

Global Genes Ukraine Rare Relief Project

Ukraine Rare Relief Project Testimonial

Ukraine Rare Relief Project Testimonial

Patient Advocacy Summit Facebook Live Kick-off Event

Patient Advocacy Summit Facebook Live Kick-off Event

Patient Advocacy Summit 2022

Patient Advocacy Summit 2022

Building A Toolbox For Research: Yael Weiss - VP, Business Development & Alliances, Ultragenyx

Building A Toolbox For Research: Yael Weiss - VP, Business Development & Alliances, Ultragenyx

Therapeutic Modalities: Ralf Schmid, PhD, MSCR - Dir, Translational Research, UPenn Gene Therapy

Therapeutic Modalities: Ralf Schmid, PhD, MSCR - Dir, Translational Research, UPenn Gene Therapy

Basic Tools of Research: James Doyle - CEO, Modelis

Basic Tools of Research: James Doyle - CEO, Modelis

Starting A Research Program from the Ground Up: Donna Appell-E.D., Hermansky-Pudlak Syndrome Network

Starting A Research Program from the Ground Up: Donna Appell-E.D., Hermansky-Pudlak Syndrome Network

The Building blocks of Disease understanding

The Building blocks of Disease understanding

Building a Foundation for Success in Clinical Research

Building a Foundation for Success in Clinical Research

Getting Your Community Ready for Clinical Trials

Getting Your Community Ready for Clinical Trials

What Does It Take to Become a Research-Ready Organization?

What Does It Take to Become a Research-Ready Organization?