In Memory of Tiffany House

With profound sadness, we bid farewell to Tiffany House – a powerful voice, tireless advocate for the Pompe community, and above all, a dear friend.

Tiffany was diagnosed with Pompe disease at the age of twelve. For her, this marked the beginning of a lifelong fight — not only for herself but, more importantly, for others. Her parents founded the Acid Maltase Deficiency Association (AMDA) to provide support for people living with Pompe disease. Tiffany later took over as chairperson, and together with her family, she built the organization into a space where patients felt heard and supported. She was also a strong driving force in the International Pompe Association (IPA), eventually serving as its chairman.

At a young age, Tiffany had the unique opportunity to participate in a clinical trial at Erasmus Medical Center, becoming the world’s first late-onset patient to access treatment. This experience further fueled her determination to advocate for others. Thanks to her immense efforts, countless Pompe patients over the years have gained access to the same treatment that made such a difference in her life.

Despite the physical challenges posed by her condition, Tiffany successfully completed her law degree — a testament to her perseverance. She brought the same dedication to her work with the AMDA and the IPA, where she fought for equal access to care, research, and treatment for everyone affected by Pompe disease. Additionally, Tiffany was an advocate for research and pushed for expanded access to real-world data through international collaboration.

Tiffany was more than a patient or a chairman. She was a friend, an inspiration, and a leader. Her strength lay not only in what she accomplished but in who she was: warm, compassionate, and resolute.

We will miss her deeply, but her voice and legacy live on through the work of the AMDA and the lives she touched.

Rest in peace, dear Tiffany.