Prince and Pfeiffer
This article was originally written a year ago. We are republishing it today in Prince’s memory. I’m sure you’ve seen countless tributes to Prince
- Rare Disease News
Born A Hero
Born A Hero
Born A Hero works to empower children suffering from Pfeiffer Syndrome, by both trying to improve the quality of life for those affected and by educating the world so that others recognize that these children are heroes. Born A Hero sheds light on the medical and social issues surrounding Pfeiffer’s syndrome and shares relevant events and other supportive resources with the community.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Pfeiffer Syndrome
Mariana’s Medical Journey Part 2: A Diagnosis
This is part 2 of Marian’a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we
Mariana’s Medical Journey Part 3: Embracing Difference
This is the last segment of Mariana’s medical journey written by Mariana’s mother, Carolina. Click here for part one and here for part two. Before
Changing the Use of “Special Needs”
From the perspective of a mother with a child who has a serious and rare medical condition, Pfeiffer syndrome. There are many reasons why the
Editor’s Choice: Rare Diseasing with Exercise and Dogs
Get informed and gear up for Rare Disease Week this Monday! Start with our Editor’s Choice. This week we have a sweet story about a
The Seattle Rare Disease Fair was a Blooming Success!
The First Ever Seattle Rare Disease Fair happened on June 3rd, 2017. And it was a BLOOMING success. The goal of the event was to
