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Creating an Inclusive Table: Celebrating PKU Awareness

December 15, 2022 Jocelyn Wang Leave a Comment

by Jocelyn Wang, MMSc candidate December is a big month for awareness days and celebrations. One that you might not be aware of is Phenylketonuria (PKU) Awareness Day which is… CONTINUE

Filed Under: Advocacy, Education Tagged With: awareness, Baby's First Test, Jocelyn Wang, Mayo Clinic, Medline Plus, NBS, newborn screening, Phe, Phenylalanine, PKU, PKU diagnosis, PKU holidays, PKU Newborn Screening, PKU receipe

Endless Hope for Klippel-Feil Syndrome

August 6, 2018 Ruth O'Keefe 6 Comments

Awareness - Klippel-Feil syndrome - ThinkGenetic

Editor’s Note: It has been such an honor working with Sharon Rose to represent the Klippel-Feil syndrome (KFS) community. Sharon Rose shared her strong desire to work with ThinkGenetic to… CONTINUE

Filed Under: Advocacy, Education Tagged With: advocacy, advocate, awareness, chronic pain, Coordination of Rare Diseases at Sanford, Ehlers-Danlos syndrome, Emily Lemiska, KFS, KFS Freedom, Klippel-Feil Syndrome, Philip Giampietro, raredisease, research, Sharon Rose Nissley, St. Christopher’s Hospital for Children

International Umbrella Organization Joins ThinkGenetic Advocacy Partner Program

June 27, 2017 Ruth O'Keefe Leave a Comment

FMF & AID (familial Mediterranean fever and autoinflammatory diseases) Global Association has become an official ThinkGenetic Advocacy Partner, continuing the ThinkGenetic expansion worldwide. “Genetic conditions know no boundaries, and neither… CONTINUE

Filed Under: Partners Tagged With: advocacy partner, autoinflammatory disease, awareness, Familial Mediterranean Fever, FMF & AID, FMF & AID Global Association, Len Barker, Malena Vetterli

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