Rarely Discussed Podcast
18 videos • 160 views • by Rarely Discussed Podcast
1
Rarely Discussed Podcast: Porphyria, Who We Are, Why We Are Doing It & All Things Rare Disease
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2
Feeling At Ease With A Rare Disease & Giving Yourself Grace | Living With Hereditary Coproporphyria
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3
Finding What Works For You | Living With Erythropoietic Protoporphyria (EPP)
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4
A Caregivers Perspective On Rare Disease | Keeping Balance In Chaos & Porphyria
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5
How Advocating Led To Breakthroughs | Living With Porphyria For Over 47 Years
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6
Grieving The Life You Had With A Rare Disease & Asking For Help When You Need It!
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7
Dr. Roy E. Smith Talks Rare Disease & Treating Porphyria
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8
Why You Must Advocate For Yourself | Living With A Rare Disease
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9
Using Pain Management Techniques To Ease Suffering
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10
Why Finding Community Is Important When Dealing With A Rare Disease
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11
How Journaling Has Led To His Breakthrough With Porphyria
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12
How Asking For Help And Spreading Awareness Paved The Way To Success
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13
A Perspective From A Scientist With A Rare Disease
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14
Pregnancy & Porphyria: Living Life With Porphyria
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15
From Porphyria To Cancer: How Trials Helped The Journey
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16
Living With Porphyria: A Patient And Caretaker Perspective
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17
31 Years Without a Diagnosis: Kelly’s Battle With Variegate Porphyria
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18
Mental Health with a Rare Disease: What Actually Helps
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