Rare Connection

By Joanna

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Category: Education

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Episodes: 77

Description

Formerly  Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act.   Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories.  Rare conditions are called zebras hence the zebra striped ribbon.  More common conditions are called horses.  Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture.  Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime.  As someone with a rare condition myself (Homocystinuria or HCU),  know that having a rare condition can be very lonely.  Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death.  If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com.  I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

Episode Date
Can Targeted Radiation Change the Future of Brain Cancer? | Dr. Marc Hedrick | Plus Therapeutics
Jun 04, 2026
McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics
May 09, 2026
Friedreich's Ataxia With Alexis From Tennessee
Apr 22, 2026
Adrenoleukodystrophy With Elisa From New York
Apr 14, 2026
26 Year Stomach Cancer Survivor Healing with Food with Chef Chuck
Apr 08, 2026
Denovo (Genetic But Not Inhereited) With Jenny From Texas
Mar 23, 2026
New Drug For Duchenne Muscular Dystrophy With Dr. Steven Quay
Mar 19, 2026
Schizencephaly with Glen from California
Mar 12, 2026
Atypical Hemolytic Uremic Syndrome With Taylor From California
Feb 28, 2026
Spinal Muscular Atrophy With Candis From California
Feb 19, 2026
Accelerated Global Clinical Trial With Julio Martinez- Clark
Feb 10, 2026
New Drug for RDEB Skin Condition With Professor Mark Lowdell From The UK
Dec 20, 2025
Dyscalculia With Michelle From Pensylvania
Dec 03, 2025
Partial Trisomy 8Q Duplication Syndrome Wuth Saida From California
Oct 11, 2025
Okur Chung Neuro Developmental Syndrome (OCNDS) With Jillian from Massachusetts
Sep 29, 2025
NEDAMSS With Liz From Florida
Aug 09, 2025
Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner
Aug 08, 2025
Palliative care with Anne Front LMFT from California
Jul 31, 2025
TNRC6B With Keyundra From Arkansas
Jul 20, 2025
Idiopathic Intercranial Hypertnsion with Stephanie From Maryland
Jul 17, 2025
CLCN6 With Paul From California
Jun 29, 2025
Sarcoidosis With Regina From Indiana
Jun 24, 2025
Glutaric Acidemia 1 with Serena From New Zealand 2nd Anniversary episode
Jun 18, 2025
Ank 3 With Tami from Kansas
Jun 07, 2025
Mental Health and Rare Disase with Frank From New York
Jun 04, 2025
Orphan Disease of HLA-B27 With Brenda From Florida
May 29, 2025
Neuromyoitis Optica with Nicki From New York
May 14, 2025
Familial Adenomatous Polyposis With Jenny From Oklahoma
May 05, 2025
From Researcher to Lymphocytic Colitis Patient Ben From South Dakota
Apr 28, 2025
Unnamed Chromosomal Disorder With Melissa From Minnesota
Apr 07, 2025
RareGen's Impact: Khartik Uppalapati on Science, Policy, and Patient Empowerment
Mar 17, 2025
Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC
Mar 17, 2025
Amazing Ways tech is helping people with rare disease!
Mar 16, 2025
Sjogren's Syndrome with Mimi From Florida
Mar 07, 2025
Alpha 1 Atrypsijn Deficiency With Mr,. Ohh From Ohio
Feb 26, 2025
Hemochromatosis With Michael from Guatemala
Feb 14, 2025
Acromegaly With Risa From Colorado
Jan 31, 2025
PKU With Danielle From Maryland
Jan 25, 2025
Superficial Siderosis With Rori From Texas
Nov 18, 2024
Male Breast Cancer With Phil From The UK
Oct 31, 2024
Homocystinuria With Erika from Florida
Oct 25, 2024
Homocystinuria Awareness Month: Classical Homocystinuria with Denise From Ohio
Oct 11, 2024
Homocystinuria Awareness Month: Classical Homocystinuria with Anna from Uruguay
Oct 10, 2024
Chronic Intestinal Pseudo Obstruction With Briana From Ohio
Sep 23, 2024
Dyskeratosis Congenita with Damien from Arizona improved sound from live
Sep 15, 2024
Congenital Muscular Dystrophy Newborn Screening Awareness Month
Sep 09, 2024
Hemophilia with Patrick James Lynch From Believe limited
Aug 31, 2024
Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD)
Aug 26, 2024
Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon
Aug 15, 2024
Menkes Disease With Daniel DeFabio From New York
Aug 02, 2024
Pura Syndrome With Melissa From Washington
Jul 22, 2024
Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida
Jul 18, 2024
High Functioning Autism (Aspburger's Syndrome) With Kadin From Ohio
Jul 13, 2024
Rare Connection Episode 11: Acoustic Neuroma with Shari from California
Jun 20, 2024
Rare Connection Episode 10: AI Assist
Jun 15, 2024
Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma
Jun 07, 2024
Rare Connection Episode 8: Mast Cell Activation Syndrome & Growth Hormone Deficiency
May 23, 2024
Primary Sclerosing Cholangitis,& Trigeminal Neuralgia
Apr 26, 2024
Rare Connection Episode 6: Calciphylaxis and Multiple Endocrine Neoplasia Type 1
Apr 14, 2024
Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS)
Apr 11, 2024
Rare Connection Episode 4: Pyruvate Dehydogenase Defiecency (PDCD)
Apr 07, 2024
Rare Connection Episode 3: GastroParesis and POTS
Apr 04, 2024
Rare Connection Episode 2 Wendy Psoriatic Arthritis
Mar 28, 2024
Rare Connection Episode 1: Homocystinuria (HCU) Jenifer from Cananda
Feb 10, 2024
Nutrition Equity Episode 13: Diabetes Awareness month With Jessica
Nov 09, 2023
Nutrition Equity Episode 12: HCU Awareness Month Cobalamin G Heather Parent
Oct 26, 2023
Nutrition Equity Episode 11: HCU Awareness Month Bharat Assistant Taste Connections
Oct 22, 2023
Nutrition Equity Episode 10: Danae Bartke Exeutive Director HCU Network America
Oct 13, 2023
Nutrition Equity Episode 8: Short Bowel Syndrome
Sep 10, 2023
Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month
Sep 10, 2023
Nutrition Equity Episode 7: Cobalamin Disorders
Aug 16, 2023
Nutrition Equity Episode 6: Tyrosinemia (TYR)
Aug 05, 2023
Nutrition Equity Episode 5: Eosiniphilia
Aug 02, 2023
Nutrition Equity Episode 4 : Cystic Fibrosis (CF)
Jul 12, 2023
Susan MSUD chair for PKU and Allied Disorders talks about MSUD
Jul 03, 2023
Nutrition Equity Episode 2 PKU with Jill
Jun 29, 2023
Kelly the National Homocystinuria representative
Jun 17, 2023