01:30

iHope program of Genetic Alliance

07:00

Disease InfoSearch is in need of funding

02:33

FedEx Grant Video

36:29

Recurrent Ovarian Cancer: Treatment Guidance After Cancer Returns

01:31

Genetic Alliance in service to under-resourced communities

49:38

Cross Condition Burden of Disease Study

54:19

Registries and Studies Webinar

52:37

Community Driven Innovation™

43:01

Repurposing Drugs in a Novel Way: EspeRare

01:06:23

Disease InfoSearch and GaugeRx

39:17

Disability Study

29:34

NETS

01:54:19

Genetic Alliance Research Symposium

37:57

A Registry-based Prospective Natural History Study: Lessons Learned

56:47

Strategic Growth and Support for the Pancreatic Cancer Action Network's Research Agenda

26:54

Lessons From the Field: Harnessing Pharmaceutical Interest In the Rare Disease Space

01:01:42

Engaging stakeholders in health research: principles, methods, and tools for authentic engagement.

43:10

Lessons From the Field: Understanding of Freeman-Burian syndrome

43:11

Lessons From the Field: Genetic Testing for Stomach Cancer. Who, Where and Why You Should Be Tested?

22:58

Lessons From the Field: Colorectal Cancer Canada's Get Personal Program

53:13

Questions and Answers About Data Science

23:12

Lessons From the Field: Utilizing Patient Registry to Further Connections to the Research Community

31:19

UMSDF Ambassadors Program: Accelerate Advocacy and Awareness

27:28

Lessons From the Field: Introduction to the National Down Syndrome Adoption Network

59:19

Dancing with Data: GDPR and Data Privacy - Impediment or Enabler?

29:59

Lessons From the Field: The National Birth Defect Registry

15:10

Lessons From the Field: Community Developed Spina Bifida Research Agenda

36:02

Lessons From the Field: Patient/Parent Outreach is Key to Advocacy

46:31

Lessons From the Field: The Importance of Collaboration in the Rare Disease Space

37:08

Building an Expert Clinical Trial Community on ClinWiki

35:03

Coronavirus Vaccines Webinar - Dr. Francis Collins

57:27

The Importance of Natural History Studies

01:00:41

Planning a Patient Registry

42:06

The PhenX Toolkit May 2020: COVID-19 and Social Determinants of Health

51:01

Listening to the Patient Voice in Healthcare Using Patient-Reported Outcomes

23:14

Genetic Service Considerations for Special Patient Populations: Illiteracy and Low Health Literacy

58:10

Highlighting Parent Support Offerings from Parent to Parent USA

01:17:02

Clinical Trials Done Differently

45:02

Highlighting Advocacy Tools to Share with Your Community

50:02

The Impact of GDPR on Collecting and Using Data

57:24

The Sentinel System - FDA's Post-Marketing Safety Surveillance System for Medical Products

02:36

Disease Info Search

01:02:05

Human Genome Editing Science, Ethics, and Governance - Webinar Recording

01:03:21

Implementing Public Health Genomics in Your State

02:36

Disease Info Search

01:06:07

Patient Navigation: Care Coordination Meets Peer Support

56:06

Addressing Gaps in Genetic Services Regional and National Models in the US

52:31

Familial Hypercholesterolemia in Public Health and Clinical Practice

01:41

Undiagnosed Diseases Intern Project Description

02:08

Survey Development Intern Project Description

02:32

Perspective Piece Intern Project Description

01:16

PEER Intern Project Description

03:30

PCORI Intern Project Description

02:15

The Obesity Project Intern Description

02:27

Medical Device Map Intern Project Description

02:17

GaugeRx Intern Project Description

02:43

Beyond The DNA: An Informative Guide to Epigenetics and Health Description

02:33

Disease InfoSearch Intern Project Description

01:54

Free the Data Intern Project Description

01:46

Baby's First Test Intern Project Description