Rare Connection cover art

All Episodes

Rare Connection — 86 episodes

#
Title
1

Dystonia-Parkinsonianism With the Stone Family from Maryland

2

Wiedemann-Steiner Syndrome With Melissa From New Jersey

3

Ceiling Track Lifts and Eye Gaze Technology With Jeneva from Maryland

4

Narcolepsy With Heather from Maine

5

Undiagnosed With Christine from Pennsylvania

6

FoxG1 With Patricia from New Jersey in Person in Pennsylvania

7

EveryCat Health Foundation: The Cat Connection to Long Covid Part 2 With Dr Maggie Placer

8

EveryCat Health Foundation: The Cat Connection to Long COVID In Humans with Dr Placer

9

Rare Connection 3rd Anniversary Episode With Dr. Margurite Goiter-Stam from Make a Wish International

10

Can Targeted Radiation Change the Future of Brain Cancer? | Dr. Marc Hedrick | Plus Therapeutics

11

McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics

12

Friedreich's Ataxia With Alexis From Tennessee

13

Adrenoleukodystrophy With Elisa From New York

14

26 Year Stomach Cancer Survivor Healing with Food with Chef Chuck

15

Denovo (Genetic But Not Inhereited) With Jenny From Texas

16

New Drug For Duchenne Muscular Dystrophy With Dr. Steven Quay

17

Schizencephaly with Glen from California

18

Atypical Hemolytic Uremic Syndrome With Taylor From California

19

Spinal Muscular Atrophy With Candis From California

20

Accelerated Global Clinical Trial With Julio Martinez- Clark

21

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

22

Dyscalculia With Michelle From Pensylvania

23

Partial Trisomy 8Q Duplication Syndrome Wuth Saida From California

24

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

25

NEDAMSS With Liz From Florida

26

Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner

27

Palliative care with Anne Front LMFT from California

28

TNRC6B With Keyundra From Arkansas

29

Idiopathic Intercranial Hypertnsion with Stephanie From Maryland

30

CLCN6 With Paul From California

31

Sarcoidosis With Regina From Indiana

32

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

33

Ank 3 With Tami from Kansas

34

Mental Health and Rare Disase with Frank From New York

35

Orphan Disease of HLA-B27 With Brenda From Florida

36

Neuromyoitis Optica with Nicki From New York

37

Familial Adenomatous Polyposis With Jenny From Oklahoma

38

From Researcher to Lymphocytic Colitis Patient Ben From South Dakota

39

Unnamed Chromosomal Disorder With Melissa From Minnesota

40

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

41

Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC

42

Amazing Ways tech is helping people with rare disease!

43

Sjogren's Syndrome with Mimi From Florida

44

Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio

45

Hemochromatosis With Michael from Guatemala

46

Acromegaly With Risa From Colorado

47

PKU With Danielle From Maryland

48

Superficial Siderosis With Rori From Texas

49

Male Breast Cancer With Phil From The UK

50

Homocystinuria With Erika from Florida

51

Homocystinuria Awareness Month: Classical Homocystinuria with Denise From Ohio

52

Homocystinuria Awareness Month: Classical Homocystinuria with Anna from Uruguay

53

Chronic Intestinal Pseudo Obstruction With Briana From Ohio

54

Dyskeratosis Congenita with Damien from Arizona improved sound from live

55

Congenital Muscular Dystrophy Newborn Screening Awareness Month

56

Hemophilia with Patrick James Lynch From Believe limited

57

Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD)

58

Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon

59

Menkes Disease With Daniel DeFabio From New York

60

Pura Syndrome With Melissa From Washington

61

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

62

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

63

Rare Connection Episode 11: Acoustic Neuroma with Shari from California

64

Rare Connection Episode 10: AI Assist

65

Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma

66

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

67

Primary Sclerosing Cholangitis,& Trigeminal Neuralgia

68

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

69

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

70

Rare Connection Episode 4: Pyruvate Dehydogenase Defiecency (PDCD)

71

Rare Connection Episode 3: GastroParesis and POTS

72

Rare Connection Episode 2 Wendy Psoriatic Arthritis

73

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

74

Nutrition Equity Episode 13: Diabetes Awareness month With Jessica

75

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

76

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

77

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

78

Nutrition Equity Episode 8: Short Bowel Syndrome

79

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

80

Nutrition Equity Episode 7: Cobalamin Disorders

81

Nutrition Equity Episode 6: Tyrosinemia (TYR)

82

Nutrition Equity Episode 5: Eosiniphilia

83

Nutrition Equity Episode 4 : Cystic Fibrosis (CF)

84

Susan MSUD chair for PKU and Allied Disorders talks about MSUD

85

Nutrition Equity Episode 2 PKU with Jill

86

Kelly the National Homocystinuria representative