SohebNov 9, 2023

Has anyone with #PKU heard of Kevin Alexander's podcast "Never Give Up: A Rare Disease Podcast"?

I briefly met him at the ESPKU, and he was absolutely lovely, just making my way through his podcast now!

https://open.spotify.com/show/5jW0TZlMvtnyK6ivW5kFDE?si=433bcf6eb27144e5

#pku #phenylketonuria #geneticdisorder #Podcast #RareDisease #RareConditions

Never Give Up: A Rare Disease Podcast

Listen to Never Give Up: A Rare Disease Podcast on Spotify. Life. Mental Health. Rare Disease. That’s what Never Give Up is all about. This podcast is a companion to my blog, PKUJournal.com. I’m Kevin Alexander, and I’ve been a professional storyteller for over 20 years. I’m also an adult living with the rare disease Phenylketonuria, or PKU. Since 2012 I’ve been traveling the world advocating for PKU, newborn screening, and rare disease awareness. Living with a rare disease can be a heavy burden, so on this podcast I share thoughts, reflections, and stories to motivate you on your journey.

Spotify
Shrishti Softech SolutionsAug 3, 2023

"Alone, we can do so little; together, we can do so much."

This quote emphasizes the power of community and collaboration in driving change, supporting those in need, and fostering awareness and understanding about rare conditions like Cloves Syndrome. By coming together, we can make a significant impact and create a more compassionate and inclusive world.

Visit our websites
www.shrishtisoftech.com

#ClovesSyndrome
#RareDisease
#InvisibleIllness
#RareConditions
#ChronicIllness
#GeneticDisorder

Show threadMediPaCeFeb 23, 2023

Are you interested in reading more about the #experiences of people living with #RareConditions?

Check these:
⭐ @EURORDIS https://www.eurordis.org/rare-disease-personal-stories/
⭐ @PatientWorthy https://patientworthy.com

#FamilyPerspectives #RareDiseaseDay #PatientEngagement #PatientInvolvement #MediPaCe

Living with a rare disease - EURORDIS

Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families. Here is a collection of stories and videos from people who have generously shared their experiences of living with a rare disease. Would you like to share you own experience? Contact us for more information

EURORDIS
Kemi SulolaDec 3, 2022

Anyone one in the #Sarcoidosis community on here 🙋🏾‍♀️ would love to connect

#Repost @sarcoidosisuk
• • • • • •
We are delighted to welcome Kemi Sulola as our #Charity #Ambassador
• • • • • •

Looking forward to taking on my new role where I can share the #Stories of other,

If you are interested in #sharing your story with sarcoidosis UK please #reach out to me on [email protected].

#health #Journey #Community #Conditions #RareConditions #Warriors #Hope #Healing #Artist