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MitoAction

MitoAction

Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease

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Dr. Neena Nizar – Share Your #RareDiseaseTruth & Give Love A Chance

Mar 1, 2023

PARENTS AS RARE - EPISODE 076 Dr. Neena Nizar - Share Your #RareDiseaseTruth & Give Love A Chance Dr. Neena Nizar …

[Read more...]

patient stories, podcast, rare disease

Dalia’s Wish Makes Dreams Come True for the Del Forno Family

Mar 1, 2023

ENERGY IN ACTION - EPISODE 075Dalia’s Wish Makes Dreams Come True for the Del Forno FamilyNicole Del Forno is the mom of …

[Read more...]

dalias wish, energy in action, podcast

Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim McLerran, Head of Product, Medical Intelligence One, Inc

Oct 20, 2022

PARENTS AS RARE - EPISODE 068Special Episode - Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim …

[Read more...]

What’s It Like Being A Research Patient with the UDN? Ted Perron Shares his Story

Oct 13, 2022

ENERGY IN ACTION - EPISODE 067What's It Like Being a Research Patient with UDN - Ted Will Tell YouIn addition to being …

[Read more...]

Parenting with Sarcoidosis & Discussing the Global Genes 2022 Rare Patient Advocacy Summit

Aug 18, 2022

PARENTS AS RARE - EPISODE 062Mary Morlino - Parenting with Sarcoidosis & Discussing the Global Genes 2022 RARE …

[Read more...]

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Upcoming Events

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May 9
12:00 pm

Weekly Support Call

May 9
12:00 pm - 1:00 pm

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles

May 11
All day

Celebrate Mother’s Day

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Expert Series

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May 9
12:00 pm - 1:00 pm

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles

May 15
7:00 pm - 8:00 pm

Expert Series: Serial Casting and Toe Walking

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Last Presentation

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles
Presented April 11, 2025

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