Rare Connection cover art

All Episodes

Rare Connection — 76 episodes

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Title
1

McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics

2

Friedreich's Ataxia With Alexis From Tennessee

3

Adrenoleukodystrophy With Elisa From New York

4

26 Year Stomach Cancer Survivor Healing with Food with Chef Chuck

5

Denovo (Genetic But Not Inhereited) With Jenny From Texas

6

New Drug For Duchenne Muscular Dystrophy With Dr. Steven Quay

7

Schizencephaly with Glen from California

8

Atypical Hemolytic Uremic Syndrome With Taylor From California

9

Spinal Muscular Atrophy With Candis From California

10

Accelerated Global Clinical Trial With Julio Martinez- Clark

11

New Drug for RDEB Skin Condition With Professor Mark Lowdell From The UK

12

Dyscalculia With Michelle From Pensylvania

13

Partial Trisomy 8Q Duplication Syndrome Wuth Saida From California

14

Okur Chung Neuro Developmental Syndrome (OCNDS) With Jillian from Massachusetts

15

NEDAMSS With Liz From Florida

16

Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner

17

Palliative care with Anne Front LMFT from California

18

TNRC6B With Keyundra From Arkansas

19

Idiopathic Intercranial Hypertnsion with Stephanie From Maryland

20

CLCN6 With Paul From California

21

Sarcoidosis With Regina From Indiana

22

Glutaric Acidemia 1 with Serena From New Zealand 2nd Anniversary episode

23

Ank 3 With Tami from Kansas

24

Mental Health and Rare Disase with Frank From New York

25

Orphan Disease of HLA-B27 With Brenda From Florida

26

Neuromyoitis Optica with Nicki From New York

27

Familial Adenomatous Polyposis With Jenny From Oklahoma

28

From Researcher to Lymphocytic Colitis Patient Ben From South Dakota

29

Unnamed Chromosomal Disorder With Melissa From Minnesota

30

RareGen's Impact: Khartik Uppalapati on Science, Policy, and Patient Empowerment

31

Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC

32

Amazing Ways tech is helping people with rare disease!

33

Sjogren's Syndrome with Mimi From Florida

34

Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio

35

Hemochromatosis With Michael from Guatemala

36

Acromegaly With Risa From Colorado

37

PKU With Danielle From Maryland

38

Superficial Siderosis With Rori From Texas

39

Male Breast Cancer With Phil From The UK

40

Homocystinuria With Erika from Florida

41

Homocystinuria Awareness Month: Classical Homocystinuria with Denise From Ohio

42

Homocystinuria Awareness Month: Classical Homocystinuria with Anna from Uruguay

43

Chronic Intestinal Pseudo Obstruction With Briana From Ohio

44

Dyskeratosis Congenita with Damien from Arizona improved sound from live

45

Congenital Muscular Dystrophy Newborn Screening Awareness Month

46

Hemophilia with Patrick James Lynch From Believe limited

47

Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD)

48

Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon

49

Menkes Disease With Daniel DeFabio From New York

50

Pura Syndrome With Melissa From Washington

51

Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida

52

High Functioning Autism (Aspburger's Syndrome) With Kadin From Ohio

53

Rare Connection Episode 11: Acoustic Neuroma with Shari from California

54

Rare Connection Episode 10: AI Assist

55

Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma

56

Rare Connection Episode 8: Mast Cell Activation Syndrome & Growth Hormone Deficiency

57

Primary Sclerosing Cholangitis,& Trigeminal Neuralgia

58

Rare Connection Episode 6: Calciphylaxis and Multiple Endocrine Neoplasia Type 1

59

Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS)

60

Rare Connection Episode 4: Pyruvate Dehydogenase Defiecency (PDCD)

61

Rare Connection Episode 3: GastroParesis and POTS

62

Rare Connection Episode 2 Wendy Psoriatic Arthritis

63

Rare Connection Episode 1: Homocystinuria (HCU) Jenifer from Cananda

64

Nutrition Equity Episode 13: Diabetes Awareness month With Jessica

65

Nutrition Equity Episode 12: HCU Awareness Month Cobalamin G Heather Parent

66

Nutrition Equity Episode 11: HCU Awareness Month Bharat Assistant Taste Connections

67

Nutrition Equity Episode 10: Danae Bartke Exeutive Director HCU Network America

68

Nutrition Equity Episode 8: Short Bowel Syndrome

69

Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month

70

Nutrition Equity Episode 7: Cobalamin Disorders

71

Nutrition Equity Episode 6: Tyrosinemia (TYR)

72

Nutrition Equity Episode 5: Eosiniphilia

73

Nutrition Equity Episode 4 : Cystic Fibrosis (CF)

74

Susan MSUD chair for PKU and Allied Disorders talks about MSUD

75

Nutrition Equity Episode 2 PKU with Jill

76

Kelly the National Homocystinuria representative