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Raising Rare

@Raising_Rare

Raising Rare focuses on two families’ stories as they navigate a largely uncharted path: the search for treatment, help, and strength raising a rare child.

raisingrare.fm
Joined February 2020
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Photo by Raising Rare (@Raising_Rare)Photo by Raising Rare (@Raising_Rare)Photo by Raising Rare (@Raising_Rare)
Episode 10 is available now. raisingrare.fm/episodes/hope…
Picture on left of a seedling growing between iron. Text on right: Raising Rare. Season 4 episode 10. Hope is a prerequisite for action. August 2, 2023.

ALT Picture on left of a seedling growing between iron. Text on right: Raising Rare. Season 4 episode 10. Hope is a prerequisite for action. August 2, 2023.

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Our new episode is available now. raisingrare.fm/episodes/mira…

What if we could reduce the stress of caregiving? — Raising Rare

On this episode of Raising Rare we talk with one of Kevin’s old colleagues, Vik Sharma. Vik is the father of two wonderful children. Vik talks with our hosts about the importance of patience, the...

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Check out this #cystinosis story featured on the @Raising_Rare podcast. @WymanTimothy #RareDisease
Raising Rare (@Raising_Rare) profile pictureRaising Rare@Raising_Rare2 Aug 2023
Episode 10 is available now. raisingrare.fm/episodes/hope…
Picture on left of a seedling growing between iron. Text on right: Raising Rare. Season 4 episode 10. Hope is a prerequisite for action. August 2, 2023.

ALT Picture on left of a seedling growing between iron. Text on right: Raising Rare. Season 4 episode 10. Hope is a prerequisite for action. August 2, 2023.

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We have a special, new episode with @theartofwoo from @angelaidcares for #MentalHealthAwarenessMonth Available now. raisingrare.fm/episodes/whoc…

Who cares for the caregivers? — Raising Rare

Cristol Barrett O’Loughlin, founder of ANGEL AID CARES, was a caregiver to 3 of her brothers early in her life; now she works to care for caregivers.

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Coming soon... Please follow our friends @Raising_Rare who will feature a #cystinosis family on an upcoming podcast. player.captivate.fm/episode/… #RareDisease #CystinosisAware
Cystinosis Awareness Day is May 7th

Cystinosis Awareness Day is May 7th

Later this year we will be talking to Kacy Wyman and her Dad, Tim. Kacy was diagnosed with Cystinosis when she was very young and is now in college. Her family has given her more than just...

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Our new episode is available now. raisingrare.fm/episodes/patr…
Patrick Girondi: Rags to Riches to Rondone — Raising Rare

Patrick Girondi: Rags to Riches to Rondone — Raising Rare

In the small town in Southern Italy where Patrick now lives, there is a bird that cannot take flight on its own, it requires the help of a tall building or a passerby throwing it as high in the air...

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#RareDiseaseTruth 🧵 "The take away is that I have yet to meet another person/professional who has ever had a kid like mine. They won't know more about him than me and that's ok as long as they don’t act like they do. We do the heavy lifting at the forefront so you don’t have 2"
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Megan is a rare mama to 18 year old, identical twin daughters. When one daughter was diagnosed with a genetic condition she knew it meant her other daughter had it as well. Listen to her story on our new episode. Available now. raisingrare.fm/episodes/twin…

Twin Genetics One Diagnosis — Raising Rare

Megan is a rare mama to two 18 year old daughters that have been diagnosed with Familial Cerebral Cavernous Malformation (FCCM), and a teenage son that is a freshman in High School. Listen to the...

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We're so excited to share our new episode with you. Susan Geoghegan is an amazing mom of two rare babies given the challenge in life of Mitochondrial Disease effecting the FBXL4 gene. raisingrare.fm/episodes/susa…
Susan Geoghegan - Caregiver to Caregiver — Raising Rare

Susan Geoghegan - Caregiver to Caregiver — Raising Rare

Susan’s journey into parenthood was not what she had planned, but as a business owner and wedding planner she soon learned that she was going to have to plan things in a much different way and...

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I see I have struck a nerve which is exactly what I am hoping to do. #GeneticTesting needs to be standard practice when treating children with umbrella term diagnosis'. The definition of #CerebralPalsy has already changed once and it needs to change again. Here is the problem 🧵
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Our new episode is available now! raisingrare.fm/episodes/jama…
Jamas LaFreniere - Corn Starch, Quality of life, and the importance of an Umbrella — Raising Rare

Jamas LaFreniere - Corn Starch, Quality of life, and the importance of an Umbrella — Raising Rare

On this episode of Raising Rare, we have the opportunity of talking with Jamas LaFreniere the father of a daughter with Glycogen Storage Disorder Type 1B. He talks with Sanath and Brittany about the...

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We'd like to grow more on Twitter. Could you do us a favor please? Share this tweet with someone you think would find the information valuable as we seek to bring together families and advocacy partners to help children with DEEs live their best lives. #thankyou #community
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We're always looking for new guests, if you're the parent of a child with a rare disease and would like to tell your family's story send us a DM. #RareDisease #rareis
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After some rapid fire recording we have a handful of episodes in the works! Follow us wherever you listen to podcasts to be notified when a new episode is available. (It should be every other Thursday going forward, but being a rare parent can get unpredictable.) #RareDisease
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When patient advocacy groups partner with drug makers, awesome things can happen. Patient groups will always be closer to community members and with it a symbiotic relationship can develop. This is the kind of thing leadership development programs need to teach inside pharma.
Image from Gunnar Esiason (@G17Esiason)
Image from Gunnar Esiason (@G17Esiason)
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Raising Rare retweeted
Salem Oaks (@SalemOaks) profile picture
Salem Oaks@SalemOaks1 Mar 2023
At Salem Oaks we create education that brings patients and researchers together. We also produce two rare disease podcast @Raising_Rare and @BeLEMSaware Rare Disease has always been close to our hearts. We're excited to be hosting #hcldr for #RareDiseaseDay2023
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Raising Rare retweeted
Jamie Roger (@JamieRoger8) profile picture
Jamie Roger@JamieRoger81 Mar 2023
Sometimes we need to think out of the box to think about all of the different types of technology we are able to use... and that sometimes there are just better options than others #hcldr @Raising_Rare @SalemOaks
Raising Rare (@Raising_Rare) profile pictureRaising Rare@Raising_Rare28 Feb 2023
Next up on our favorite episodes: Comparing Notes: Transitions Are A Constant in Rare Disease Who knew talking about G-tubes could be so fun? #RareDiseaseDay #RareDiseaseDay2023 raisingrare.fm/episodes/tran…
Comparing Notes: Transitions are a Constant in Rare Disease — Raising Rare

Comparing Notes: Transitions are a Constant in Rare Disease — Raising Rare

The day you hear that your child has a rare disease your life changes. And the changes just keep coming. From dietary changes, to feeding tubes, to school, and even additional diagnoses. These lead...

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Raising Rare retweeted
Salem Oaks (@SalemOaks) profile picture
Salem Oaks@SalemOaks1 Mar 2023
T4: We produce two podcasts about rare disease (and may be adding a third this year ... shhh ... it's a secret) @Raising_Rare and @BeLEMSaware #hcldr #RareDiseaseDay2023
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We spent today sharing our favorite episodes. #hcldr #RareDiseaseDay2023
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