-
Mashup Score: 1The Many Hats of a Caregiver: Elizabeth’s Story for Rare Disease Day - National Organization for Rare Disorders - 2 year(s) ago
I am a caregiver to my 2 ½ year old son who has hypophosphatasia (HPP). He was diagnosed right before he turned 6 months.
Categories: Latest Headlines, Rare DiseaseTweet
-
Mashup Score: 0Head of the Herd: Deb Ayres, President, The Avalon Foundation - NORD (National Organization for Rare Disorders) - 5 year(s) ago
At the Head of the Herd is… Deb Ayres, President, The Avalon Foundation. Deb advocates for… patients with pediatric hypophosphatasia (HPP) and their families. Deb is located in… Toledo, Ohio. How Deb got here… When my daughter Avalon (“Avie”) was ten years old, she started treatment for HPP and it was really challenging for her. Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
In the #HeadOfTheHerd spotlight this week is Deb Ayres, President of @kc4ktaf, an org which aims to provide peer-to-peer support for kids living with #hypophosphatasia (#HPP) so that they can thrive, rather than just survive. Read more: https://t.co/2sdBQsOd8i
-
-
Mashup Score: 78Warning! | There might be a problem with the requested link - 5 year(s) ago
The link you requested has been identified by bitly as being potentially problematic. This could be because a bitly user has reported a problem, a blocklist service reported a problem, because the link has been shortened more than once, or because we have detected potentially malicious content. This may be a problem because: Some URL-shorteners re-use their links, so bitly can’t guarantee the…
Source: bitly.comCategories: Latest Headlines, Rare DiseaseTweet-
Join @SoftBonesHPP for expert-led education sessions, activities & opportunities to connect with others in the #hypophosphatasia (#HPP) community on 7/11. Open to those living w/ HPP, families, caregivers & others w/ an interest in patient-focused content. https://t.co/R29fYIZc18
-
In honor of #RareDiseaseDay in one month, we're sharing stories from patients & caregivers impacted by rare diseases. In today’s community story, Elizabeth describes her experience as a caregiver for her son with #hypophosphatasia (#HPP). Read her words: https://t.co/6Cz6ttsnXM https://t.co/5TjVyYw1TJ