National PKU News provides support & resources to the PKU community. Phenylketonuria (PKU) is a rare genetic metabolic disorder that requires a low-protein diet
Montclair, NJ
Joined June 2015
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PKU News retweeted
Thrilled to announce that flok will receive $800,000 from @cziscience Rare As One Project to advance care and research in rare inherited conditions of protein metabolism. Honored to be part of this movement! flok.org/news/flok-rare-as-o… #RareAsOne #flokHealth #CZI #patientledresearch
PKU News retweeted
Thank you @RepMcGovern for advocating on the House floor today for the 2.7 million Americans with gastrointestinal or inherited metabolic disorders who rely on #medicalnutrition. It's #TimeforMNEA
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!
PKU News retweeted
Sharpen your pencils ✏️! The Guthrie-Koch Scholarship is ready to empower higher education students in our flok. College students with Classical #HCU, #MSUD, an #OrganicAcidemia, #PKU, #Tyrosinemia, or a #UreaCycleDisorder can apply by March 15 at scholars.flok.org.
PKU News retweeted
URGENT ACTION ALERT / DEADLINE 1/31!
nutritionequity.org/takeacti…
For everyone who uses medical nutrition, cares for someone who does, or has patients who require medical nutrition, please act now:
Tell CMS that Medical Nutrition should be an Essential Health Benefit Under the ACA
PKU News retweeted
Gerald Vockley, MD, PhD, Head of the Division of Medical Genetics at UPMC Children’s Hospital of Pittsburgh, discusses new data testing a probiotic to treat individuals with phenylketonuria. #PKU #raredisease @ChildrensPgh @howmuchphe @official_espku
checkrare.com/pku-treatment-…
PKU News retweeted
Today, we get personal: Share this image on your timeline and
- Tell the world why #medicalnutrition is important to you
- Tag your legislators & thank them or ask for their support
- Ask your friends and family to get involved at nutrtionequity.org/takeactio… #MNEAFinishLine
PKU News retweeted
Thank you @EmilieIkedaNBC and @NBCNightlyNews for keeping the focus on the fact that the #formulacrisis persists. People of all ages with #metabolic disorders are particularly hard-hit. @BuildUpRDNs @hbottemiller @meredithllee @howmuchphe
The baby formula shortage that has had families across the nation scrambling for months is not over yet.
@EmilieIkedaNBC has the latest updates.
nbcnews.to/3oULf3w
PKU News retweeted
Imagine you or your child had a medical condition that could only be treated by a single product. Now imagine that you couldn’t get it. buff.ly/3vmNyAy
Food insecurity takes many different forms. Thank you to @RepMcGovern for your leadership on the #MNEA HR3783
PKU News retweeted
The Medical Nutrition Equity Act has been reintroduced to the House as HR 3783, with Senate reintroduction imminent. PPMNE thanks @SenBobCasey, @SenJoniErnst, @RepMcGovern, & @HerreraBeutler for their critical leadership on this important issue. bit.ly/mnea-reintro
PKU News retweeted
Thank you to @CoryBooker's office for listening to the voices of those in the #raredisease community. With the @RareAdvocates and @howmuchphe @NutritionEquity #EveryVoiceMatters #RareAcrossAmerica2021 #MedicalNutritionEquityNow
PKU News retweeted
#RareAcrossAmerica2021 meeting 2 of 2 today. Thanks to @SenatorMenendez's office for listening to the voices of the #raredisease community. With your help (and @NutritionEquity and @howmuchphe and @RareAdvocates) we'll achieve #medicalnutritionequitynow and reauthorize #NBS
PKU News retweeted
Join our Founder, Lynn, as she leads our next webinar: Cooking Classes & Tips with Lynn.
Learn new recipes, low protein food attributes and more.
We can't wait to see you there!
Register: ow.ly/n57G50zWyeL
PKU News retweeted
Got Questions? We've got answers. Rare Disease Week on Capitol Hill 2020 Informational Webinar is Thursday, Dec 12th,1 pm ET/10 am PT. Register here bit.ly/2qCIyJd #raredc2020
PKU News retweeted
Update on newborn screening expansion campaign here in Ireland.
It’s going well....
Please share and support♥️ @SimonHarrisTD @RareDiseasesIE @rareireland @SenDavidNorris @sujas15 @DerickOMisteal @AvrilKennan @avrilbdaly @paulreiddublin @22Q11_Ireland @AlanFinglas1
PKU News retweeted
Thank you @RepRoybalAllard (CA-40) for your co-sponsorship of HR 2501, the Medical Nutrition Equity Act. Your constituents & thousands of others who rely on #medicalnutrition appreciate your support. Together, we can achieve #MedicalNutritionEquityNow #PPMNE
PKU News retweeted
Calling all artists & advocates! Have you entered the #RareArtist Contest yet? Share your art & story to help spread awareness about #rarediseases! We welcome anyone whose life is touched by a #raredisease to submit: rareartist.org/2019-art-cont…
#Rare Artist Pictured: @Ogrefairy
PKU News retweeted
Thank you @RebDebbieDingell for hearing the voices of Michiganders who rely on #MedicalNutrition. With your support and leadership as a co-sponsor of the Medical Nutrition Equity Act, HR2501, we'll achieve #MedicalNutritionEquityNow #PPMNE buff.ly/2LyXFgt
PKU News retweeted
Please welcome @TomColeOK04, Republican of Oklahoma's 4th district, as a co-sponsor of the #MNEA. Thank you Representative Cole for your support. Together we'll achieve #MedicalNutritionEquityNow
PKU News retweeted
Six more! Huge thank you to @RepTimRyan @RepBrianHiggins @SuzanDelBene @RepPerlmutter @golden4congress @AyannaPressley for your cosponsorship of HR2501 the Medical Nutrition Equity Act. Your support will help us achieve #MedicalNutritionEquityNow #PPMNE
PKU News retweeted
Anyone can be a father, but It takes a special person to be a #raredad. In honor of #FathersDay, please ask your Member of Congress to co-sponsor the #NewbornScreeningSavesLives Act H.R. 2507. It only takes a minute. bit.ly/2LiYRoj @MPSSociety @aphl @RepRoybalAllard
