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Support Groups For Rare Diseases
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Connecting Rare Disease Patient Communities and Advocacy Groups
PCORI
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CheckRare
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Natural History Studies for Rare Diseases
U.S. Food and Drug Administration
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Rare Diseases are Not Rare – A Training on Rare Disease Resources
Network of the National Library of Medicine [NNLM]
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CheckRare
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55:41
How can the medical community support the rare disease community?
Austin PBS
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25.04.2015 FAD & fFTD support group: UK Strategy for Rare Diseases
Rare Dementia Support
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24:03
Parents significantly more stressed than other adults, surgeon general warns
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Rare Disease Advocacy Groups Need to Join Together
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Rare Disease Advocacy
CheckRare
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Leading in Rare Disease Collaboration
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Rare Disease Advocacy Groups
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0:59
Rare Disease Day 2023
Williams Syndrome Association
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Rare Genetic Disorders
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Patients Matter: How Rare Disease Patients Can Move Scientific Discovery Forward
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10 Tips for Newly Diagnosed Rare Disease Patients and Families
National Organization for Rare Disorders (NORD)
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Coordination of Rare Diseases at Sanford is Uniting Researchers
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How I Got Involved in Advocacy Work for Rare Diseases: Connie Lee, PsyD
Rare Diseases Clinical Research Network (RDCRN)
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