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Support Groups For Rare Diseases

1:34

Connecting Rare Disease Patient Communities and Advocacy Groups

PCORI

91 views

1:28

The Importance of Advocacy Groups for Rare Disease Patients

CheckRare

64 views

57:24

Natural History Studies for Rare Diseases

U.S. Food and Drug Administration

73K views

57:10

Rare Diseases are Not Rare – A Training on Rare Disease Resources

Network of the National Library of Medicine [NNLM]

2.6K views

2:18

The Important Role of Advocacy Groups in Rare Diseases

CheckRare

35 views

30:08

25.04.2015 FAD & fFTD support group: UK Strategy for Rare Diseases

Rare Dementia Support

55 views

55:41

How can the medical community support the rare disease community?

Austin PBS

182 views

57:19

Self-Advocacy and Care Coordination

National Organization for Rare Disorders (NORD)

2.3K views

24:25

Ep. 37 Patients as Partners: A Winning Strategy for Drug Development

SSI Strategy

12 views

4:09

Rare Disease Advocacy

CheckRare

127 views

3:19

Rare Disease Advocacy Groups Need to Join Together

Rare Disease Report

150 views

2:09

Leading in Rare Disease Collaboration

Alexion Pharmaceuticals, Inc.

933 views

59:16

Improving the Diagnosis of Under-Recognized and Rare Diseases in Asians

Stanford Health Care

1.3K views

3:10

Rare Disease Advocacy Groups

CheckRare

41 views

4:26

Patients Matter: How Rare Disease Patients Can Move Scientific Discovery Forward

U.S. Food and Drug Administration

3K views

6:18

Rare Genetic Disorders

Mount Sinai Health System

2K views

5:18

10 Tips for Newly Diagnosed Rare Disease Patients and Families

National Organization for Rare Disorders (NORD)

8.2K views

1:53:05

Rare Disease Day 2022

David Geffen School of Medicine at UCLA

303 views

9:32

Coordination of Rare Diseases at Sanford is Uniting Researchers

Sanford Health

1.6K views

7:45

How I Got Involved in Advocacy Work for Rare Diseases: Connie Lee, PsyD

Rare Diseases Clinical Research Network (RDCRN)

40 views