sue Kr

I have a rare diseases infantile Hypophosphatasia and had 98+ fx, 31 rod surgeries, cervical 4 level fusion, hip replacement

[sue Kr @d3sert]

@outbreakupdates We are a target 365 days for decades ..people are to engulf with their fake tiptoe headlines, on what they should eat and Gucci bags to know they had a target on their foreheads.. nothing has change by hitting Tehran . Open your brain people..

[Soft Bones HPP @SoftBonesHPP]

Have you or a loved one been diagnosed with hypophosphatasia (HPP)?

Join Alexion Pharmaceuticals, Inc. as they host their #HPPEmpowered virtual educational event on Wednesday, February 19th, at 7:00 PM ET.

Register now!
https://t.co/jiWsMH5Ml3

#SoftBonesHPP #HPPcommunity

[Alexion @AlexionPharma]

Over 400 million people worldwide live with a #RareDisease. But did you know 1 of 2 patients diagnosed with a rare disease is a child?

[Alexion @AlexionPharma]

What gets our Head of Patient Experience and Insights excited about coming to work at Alexion? The shared sense of purpose. Listen to Wendy’s inspiring journey to patient advocacy and how it has led her to become a passionate advocate for patients today. https://t.co/3s1EE9jsnb

[Alexion @AlexionPharma]

Many patients who may be eligible to participate in a #RareDisease #ClinicalTrial don’t, mostly due to a lack of awareness or misconceptions about clinical trials. This leads to many patients not receiving optimal care. We’re on a mission to change that.

[Soft Bones HPP @SoftBonesHPP]

Our very own Deborah Fowler and Cindy Reasor will be featured on “Behind the Mystery of Hypophosphatasia”. It will be aired on Lifetime on October 21st and October 29th at 7:30 AM ET.

Learn more below.
https://t.co/arSDzwTpch

#SoftBonesHPP #HPPCommunity #BehindtheMystery

[Soft Bones HPP @SoftBonesHPP]

Join Region Leads, Sue Krug and Amy Britt for a Southwest Region Luncheon on Saturday, October 19, 2024, from 12-2 PM Mountain Standard Time. Lunch will be served.

Registration is required. Please register below.
https://t.co/29ouPTfBne

#SoftBonesHPP #HPPCommunity

[sue Kr @d3sert]

@AlexionPharmaUS I love this story of encouragement and acceptance. If your child has a rare diease or any other difference, it's a great book for them to read or read to.

[Alexion Pharmaceuticals U.S. @AlexionPharmaUS]

Check out our "Inspired By" book “Zara Shares Her Stripes,” a heartwarming story of embracing uniqueness and finding community. Follow Zara the zebra and her friends as they discover the beauty in their differences. Download your free copy here: https://t.co/Sm81hQwER4

[Alexion Pharmaceuticals U.S. @AlexionPharmaUS]

Why is conducting #ClinicalTrials for rare diseases difficult? Because studying a #RareDisease poses unique challenges and requires outside-of-the-box thinking. Watch the video to learn why the need for transformative medicines is great for those living with rare diseases.

[Soft Bones HPP @SoftBonesHPP]

Soft Bones is excited to announce the release of our newest episode featuring Janni K. and guest host Cindy Reasor.

Listen now!

Spotify: https://t.co/0StulT711a
Amazon Music: https://t.co/2EMHAhoKvz

#SoftBonesHPP #BonafideHPP #HPPCommunity

[Neil deGrasse Tyson @neiltyson]

Geeky Chemistry Humor for Foodies:

If Avogadro’s Number is 6.022 x 10^23 (which equals one Mole) then 6.022 x 10^23 Avocados equals one Guaca-Mole.

[sue Kr @d3sert]

I'm not your inspiration, thank you very much | Stella Young https://t.co/EJPpQh60eb via @YouTube
Stella Young put into words what all of us who are socially classified as "Disabled" believe..

[sue Kr @d3sert]

RARE DISEASE DAY IS HERE ! So today if you are a rare Zebra! Show Your stripes don’t hide them. Together we are a stronger voices that need to be heard So we can, fighting for MORE Research, Fundings, trials and knowledgeable doctors.. #RareDiseaseDay2023 #HPPStrong #Globalgene

[sue Kr @d3sert]

Today is Rare Disease Day, I would like the world to please take a moment of your time and acknowledge today like you would a federal holiday. You never know when you or a loved one will hear those words. “Yes, your diagnoses is rare “
#rarediseaseday #HPPstrong

[Rare Disease Day @rarediseaseday]

Tomorrow it's #RareDiseaseDay 2023!

💡 Light up at 7 pm wherever you are to raise awareness for people living with a rare disease!

🏛️ Find a monument being lit up near you: https://t.co/LRb1IGhZBZ

🏠 Find out how to light up your home: https://t.co/S0PNzbafDo

#LightUpForRare

[Aaron Blocker @AaronBlocker_]

Really excited to speak to one of the teams @AlexionPharma this morning about my life with a rare disease for rare disease day! #Hypophosphatasia #HPP #RareDiseaseDay2023

[sue Kr @d3sert]

Hundreds will take notice of #rarediseases Day, let's celebrate this special day Feb 28th to let all to know we aren't just a disease name, We are worthy of a treatment and cure.. Thank You @AlexionPharmaUS @rarediseaseday

[sue Kr @d3sert]

Rare Musculoskeletal Diseases in Canada: The Adult Perspective - Jan 31 ... https://t.co/RVUuSrDX3B via @YouTube register today for tonight's presentation.
Register here: https://t.co/eohg17UUUL
Rare Musculoskeletal Diseases in Canada: The Adult Perspective

[Alexion Pharmaceuticals U.S. @AlexionPharmaUS]

This year, we were proud to launch our 3rd “Inspired By” book, “Zara Shares Her Stripes: A story about accepting your rare condition.” aiming to help families with young children talk about rare diseases in an approachable and age-appropriate way. #Alexion30