Our Motivation | October 25, 2023

Caring for Children with Achondroplasia: An Interview with Dr. Ciara McDonnell

Dr. McDonnell, a renowned pediatric endocrinologist, shares her perspective about the current care experience for families affected by achondroplasia, how care has evolved and what makes her optimistic about the future.

Our Motivation | September 25, 2023

RARE Scholars Program Provides Support to College Students Living with Genetic Conditions

The program was created to support U.S. college students living with one of four rare genetic conditions who have demonstrated exceptional leadership and engagement in school and community activities.

Our Motivation | July 21, 2023

Raising a Child with Hemophilia: BioMarin Employee Jess Klass Shares Her Story

After growing up with a brother living with hemophilia A and working in roles supporting the bleeding disorder community for years, Jess Klass thought she knew everything there was to know about hemophilia.

Our Motivation | May 24, 2022

Inspired by the HAE Community, committed to helping make an impact

Last week on HAE Day, we joined the community and HAEi in the effort to raise awareness of HAE. The first report of the hereditary form of angioedema was published almost 140 years ago by Sir William Osler. It took 75 years, until 1963, for the biochemical basis of Hereditary Angioedema (HAE) to be elucidated. […]

Our Motivation | May 24, 2022

The unforgettable moments from “The Style Show: A Runway to Empower”

I am still finding it hard to believe that my lifelong dream of the “The Style Show: A Runway to Empower” is now finally a reality. In front of a sold-out room, 17 models of all shapes, sizes and abilities strutted down the runway representing true diversity in all its forms. I can still feel […]

Our Motivation | April 29, 2022

The three lessons I’ve learned from planning a fashion show that are applicable to life

There are three lessons that I’ve learned along the way that I think are applicable to any life situation, so I wanted to pass them along to all of you.

Our Motivation | April 4, 2022

It’s time to give a platform, or in my case “runway,” to people with rare disease

In a special guest series, Kendra Gottsleben takes us on her journey of planning a fashion show to celebrate diversity in all its forms.