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.

[Raising Rare @Raising_Rare]

Episode 10 is available now.

https://t.co/pXw9v5v22Q

[Raising Rare @Raising_Rare]

Our new episode is available now.
https://t.co/xZqhSHbKHk

[Cystinosis CRN @CystinosisCRN]

Check out this #cystinosis story featured on the @Raising_Rare podcast.

@WymanTimothy #RareDisease

[Raising Rare @Raising_Rare]

We have a special, new episode with @theartofwoo from @angelaidcares for #MentalHealthAwarenessMonth

Available now.

https://t.co/OoyLgb9Udi

[Cystinosis CRN @CystinosisCRN]

Coming soon...
Please follow our friends @Raising_Rare who will feature a #cystinosis family on an upcoming podcast.

https://t.co/fQIUw0aMoj

#RareDisease #CystinosisAware

[Raising Rare @Raising_Rare]

Our new episode is available now. https://t.co/lFhXOkYnIJ

[Effie Parks @OnceUponAGene]

#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"

[Raising Rare @Raising_Rare]

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.
https://t.co/fhZpGEjVog

[Raising Rare @Raising_Rare]

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.

https://t.co/PpkEwEy7kP

[Effie Parks @OnceUponAGene]

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 🧵

[Raising Rare @Raising_Rare]

Our new episode is available now!
https://t.co/vJtc8Q2fQt

[DEE-P Connections @DEE_Pconnection]

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

[Raising Rare @Raising_Rare]

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

[Raising Rare @Raising_Rare]

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

[Gunnar Esiason @G17Esiason]

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.

[Salem Oaks @SalemOaks]

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

[Jamie Roger @JamieRoger8]

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

[Salem Oaks @SalemOaks]

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

[Raising Rare @Raising_Rare]

We spent today sharing our favorite episodes. #hcldr #RareDiseaseDay2023