Embrace Rare & Promote a Healthy Diversity in Public Policy
Rare is Connected, Did you Know?
Rep. Sarbanes: Member of Congress with historical connection to shaping the evolution of federal policy on medical foods!
Rare is Advocacy
Handing over my PKU brochure to Greta Kreuz, Lung Cancer Patient Advocate Kreuz'n for a Kure, Rare Voice Awards Gala
Rare Acts Local and Thinks Global
Lobby efforts with NPKUA for "medical foods" equity, uniquely American terms unlike other industrialzed nations that afford access to PKUers
Rare Acts with Synergy
Policy analysis & advocacy compliments legal theory & winning a first-ever historic right at the federal policy level for PKU treatment!
Rare is Solution Driven, Score!
6 MONTHS RETROACTIVE Rx COVERAGE ON PKU TREATMENTUNDER BLUECROSS BLUESHIELD CARRIER TO THE FEP!
Rare Inspiration - Senate Russell Building
Federal policy appeals have gone to the Congressional level, Office, Health Policy Adviser to Senator Cardin!
Rare is Recognition
FDA Acting Commissioner spells the recipe for success: "recognition, resources and results!" - NORD Orphan Summit, keynote speaker
Rare is a Legacy, Rare Remembers
With trailblazer & PharmD, Dr. Groft, who led rare disease initiative at NIH & FDA , National Commission on Orphan Diseases, US Public Health Service commissioned officer
Rare is Knowledge
In the realm of health professionals, researchers & policy makers, taste the medical foods revolution!! - Univ. of MD
Rare Knows No Shame
Yep, gettin' down to the bare essentials, muddy for medical foods, in a hotsrping, Arctic North, Counting Stars! -with producer for poprock band - see photo at right!
Rare is a Song about Saving Lives
I'm Counting my Stars for what it means to be alive, inspiration: One Republic & using music to make others Feel Again the human side of the equation.
Rare is Newsworthy
The social injustice & discrimination must stop! Let's go viral for a vulnerable, at-risk group, command consumer protection!
Rare is Sexy
It's about time PKU adults moved up as sexy priority on political agenda!
Rare is Spirit, Make Some Noise!
Stop the Line for Patient Safety! Halting traffic in the nation's Capitol! Yes, HONK for PKU!
Rare is a Calling, Answer the Call!
Medical foods in the Halls of Justice with new, cultural entrepreneurs that know how to deliver! - President, CEO ExeGi Pharma