Congratulations to Emmalyn for receiving a Rare Voice Award! She has been a strong voice in Mississippi and in Washington, advocating for rare disease patients.
🎉 Exciting news! My daughter, Emmalyn (has GA-1), is honored to be a finalist for the 2024 RareVoice Awards, celebrating the voices that amplify rare disease advocacy.
🎟️ Reserve your spot today: https://t.co/EP0ac8WtGz
#RareVoice2024
The EveryLife Foundation held its first RareVoice Awards reception in 2012. Check out this years nominees and register to attend the ceremony here: https://t.co/3G0U0fZFnF
Learn more about the EveryLife Foundation's #EveryLIfe15for15 campaign here: https://t.co/Iog1Iiifep
As co-chair of the Rare Disease Congressional Caucus, I always appreciate the opportunity to meet families and individuals impacted by rare diseases. I met with Mississippi advocates with the EveryLife Foundation to learn how Congress can better support them.
I introduced the Medical Nutrition Equity Act with @RepRutherfordFL so families impacted by inherited metabolic diseases or gastrointestinal conditions can access the specialty food and formula they need to live their lives to the fullest. Congress should pass it NOW!
@matthewhirschey@CA_MillsVarga Does this translate into any research for Glutaric Aciduria a Acidemia Type 1. My 9 year old has GA-1 and can't process lysine and tryptophan.
@RepTrentKelly My daughter with GLUTARIC ACIDURIA/ACIDEMIA TYPE 1 counts on medical nutrition to survive. Please co-sponsor the Medical Nutrition Equity Act, S3657/HR2501. I am counting on your support. Learn more at https://t.co/B85eEQr6oJ. #PPMNE#MedicalNutritionEquityNow
@SenHydeSmith My daughter with GLUTARIC ACIDURIA/ACIDEMIA TYPE 1 counts on medical nutrition to survive. Please co-sponsor the Medical Nutrition Equity Act, S3657/HR2501. I am counting on your support. Learn more at https://t.co/B85eEQr6oJ. #PPMNE#MedicalNutritionEquityNow
@SenatorWicker My daughter with GLUTARIC ACIDURIA/ACIDEMIA TYPE 1 counts on medical nutrition to survive. Please co-sponsor the Medical Nutrition Equity Act, S3657/HR2501. I am counting on your support. Learn more at https://t.co/B85eEQr6oJ. #PPMNE#MedicalNutritionEquityNow