Embrace Rare & Promote a Healthy Diversity in Public Policy
Rare is Patient-Focused
Happy to bring the patient voice at Congressionally mandated responsibility, FDA public meeting on inborn errors.
Rare is Hope
NIH: The House of Hope, fostering discovery at the frontiers of science and medicine, promise & progress for America.
Rare is a Voice
Proud to be a megaphone on the Hill for social justice, equity and access to treatment with medical foods for PKU.
Rare is love: My son, alive & thrives
The offspring of a successfully treated PKU mother. Outcomes for untreated: microcephaly, congenital heart defects.
Rare models excellence
In the "Ways I CARE and the Values we live by." - US Dept. Veterans Affairs, I CARE for RARE campaign May 2015
Rare is Teamwork
Proudly supporting local chapter 5K event, making a difference for Maryland families with PKU.
Rare thinks Global
Our European partners in PKU share a vision for excellence in standardization and harmonization for patient-centric needs.
Rare is Innovation
On the cutting edge of innovation and revolutionary options for PKU treatment, with President and CEO, Cambrooke
Rare begins with a diagnosis
The newborn screen is the most successful preventative publc health policy ever & most widely applied genetic technology.
Rare is a Crusade
In the words of "the daughter" of newborn screening (Patricia Guthrie), PKU is a story of "passion, politics and perseverance."
Rare is a social responsibility
Safe, quality, affordable access to treatment is fundmental to the core of our American democracy and invokes nonpartisanship.
Rare is compassion (K. Moseley MS RD)
"We believe dietary treatment in these older individuals with PKU is beneficial and will increase their quality of life as well as reduce the cost of care."
Rare: Willing to Discover & Explore
NIH World Rare Disease Day: "Patients and researchers, partners for life!"
Rare is leadership
Cheers to Dr. Francis Collins, NIH Director, celebrating the lifesaving saving science supported by NIH, the House of Hope for improving lives and health of America
Rare is United
A symbol of our nation's commitment to research, more progress, more hope for improving lives.