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Resource Type: Podcasts



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

PARENTS AS RARE – EPISODE 076 Dr. Neena Nizar – Share Your #RareDiseaseTruth & Give Love A Chance Dr. Neena Nizar started the #rarediseasetruth movement. She was misdiagnosed for...


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

ENERGY IN ACTION – EPISODE 075 Dalia’s Wish Makes Dreams Come True for the Del Forno Family Nicole Del Forno is the mom of Gloria. Her family recently went...


Exploring Palliative Care

  PARENTS AS RARE – EPISODE 074 Exploring Palliative Care Kimberly Matias, a social worker, and Michelle Hurty, a physician assistant, join me for an exploratory conversation about palliative...


Meeting My MELAS Mito Friend

  PARENTS AS RARE – EPISODE 070 Meeting My MELAS Mito Friend – Elizabeth Wood I met Elizabeth Wood, a fellow mito patient, through connections at Mito Action. Elizabeth...


Granting Wishes One Trip at a Time

ENERGY IN ACTION – EPISODE 069 Give Kids the World with Justin Kiser Justin Kiser is a dad to Riley, who is five years old and has a rare...


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

PARENTS AS RARE – EPISODE 068 Special Episode – Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim McLerran, Head of Product, Medical Intelligence One, Inc....


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

ENERGY IN ACTION – EPISODE 067 What’s It Like Being a Research Patient with UDN – Ted Will Tell You In addition to being the host of the Energy...


Alex the Great and LCHAD

ENERGY IN ACTION – EPISODE 066                 Alex is in her second year of college at Texas Tech where she is studying...


Tara Zier – Stiff Person Syndrome Research Foundation and Finding Your Purpose

PARENTS AS RARE – EPISODE 065 Tara Zier – Stiff Person Syndrome Research Foundation and Finding Your Purpose Tara Zier is a rare disease patient, mother and the Founder...