YellowBrickRoadProject (@ybrp4hnrnph2) 's Twitter Profile
YellowBrickRoadProject

@ybrp4hnrnph2

YBRP is a non-profit organization whose mission is to positively impact the lives of individuals with HNRNPH2 genetic variations.

ID: 1146896991852609536

linkhttps://yellowbrickroadproject.org calendar_today04-07-2019 21:42:05

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YellowBrickRoadProject (@ybrp4hnrnph2) 's Twitter Profile Photo

💝'Tis the Season! It's GIVING TUESDAY & your generous donations mean everything to HNRNPH2 families! Look over the Year of the Pioneer gift catalog to decide how to make an impact on this day of giving! DONATE NOW at yellowbrickroadproject.org/products/year-… #yearofthepioneer #givingtuesday

YellowBrickRoadProject (@ybrp4hnrnph2) 's Twitter Profile Photo

First time taking this ride? Finding out your child has a rare disorder is a shock. As you board the "ride", you might seek counseling and/or support groups. With Rare Disease Day coming, please know: you are not alone! #ybrp #hnrnph2 #rarediseaseday #rarediseaserollercoaster

First time taking this ride?  Finding out your child has a rare disorder is a shock. As you board the "ride", you might seek counseling and/or support groups. With Rare Disease Day coming, please know: you are not alone!
#ybrp #hnrnph2 #rarediseaseday #rarediseaserollercoaster
n-Lorem Foundation (@n_lorem) 's Twitter Profile Photo

Rosie was the 1st of 3 HNRNPH2 patients to receive treatment with an n-Lorem ASO. Each of them, pioneering a path to treatment for others. Her mom, Nicole, is a pediatrician herself and admits even she doesn’t always have the answers. youtu.be/FPE7V6OKIDI?fe…

YellowBrickRoadProject (@ybrp4hnrnph2) 's Twitter Profile Photo

💛It's Rare Disease Day! The Rollercoaster life that patients with HNRNPH2 NDD lead is overwhelming. YBRP exists to find ways to accelerate paths to treatments, and to level out patients' lives.💛DONATE on Facebook or Insta or YBRP.org #hnrnph2 #rarediseaseday

💛It's Rare Disease Day! The Rollercoaster life that patients with HNRNPH2 NDD lead is overwhelming. YBRP exists to find ways to accelerate paths to treatments, and to level out patients' lives.💛DONATE on Facebook or Insta or YBRP.org  #hnrnph2 #rarediseaseday
n-Lorem Foundation (@n_lorem) 's Twitter Profile Photo

For n-Lorem’s Chief Operating Officer, Sarah Glass, PhD, the mission of n-Lorem is deeply personal. Sarah's son, Ethan, was diagnosed with a nano-rare mutation, leading her family on a daunting journey and ultimately shaping her commitment to the cause. youtu.be/xXNx9traZE8

Jennifer Bain MD/PhD (she/her/ella/Dr.) (@bainbrainlab) 's Twitter Profile Photo

Superb congrats to all the new international orgs to get each country more support for the diagnosis! France, Germany, Norway, Spain, Japan...keep them coming! We are now at 32 countries represented in our natural history study!

Superb congrats to all the new international orgs to get each country more support for the diagnosis! France, Germany, Norway, Spain, Japan...keep them coming!

We are now at 32 countries represented in our natural history study!
n-Lorem Foundation (@n_lorem) 's Twitter Profile Photo

Freshen up on ASO Technology 〰️🧠 Did you know? n-Lorem has released over 30 Intro to Medical Science episodes breaking down complex topics—like ASOs, risk assessment, and advanced genetics—to help patients and families make informed decisions. youtube.com/playlist?list=…

n-Lorem Foundation (@n_lorem) 's Twitter Profile Photo

Induced pluripotent stem cells (iPSCs) are a groundbreaking, and mind-blowing, scientific advancement—one of many that, without them, n-Lorem would not be able to do what we do. nlorem.org/what-are-ipscs…

Jennifer Bain MD/PhD (she/her/ella/Dr.) (@bainbrainlab) 's Twitter Profile Photo

Summer meeting #5 with HNRNPH2-related NDD and other HNRNP-RNDDs! These are my people and I care for them all so deeply. Thank you for the honor of caring for your families and learning from them.

Summer meeting #5 with HNRNPH2-related NDD and other HNRNP-RNDDs! These are my people and I care for them all so deeply. 

Thank you for the honor of caring for your families and learning from them.
Jennifer Bain MD/PhD (she/her/ella/Dr.) (@bainbrainlab) 's Twitter Profile Photo

Looking for more clinical and research partners in the US and abroad! Reach out if you have any patients with hnrnp disorders or are willing to learn and welcome families to their clinic!! ncbi.nlm.nih.gov/books/NBK58401… ncbi.nlm.nih.gov/books/NBK57857…

Looking for more clinical and research partners in the US and abroad! Reach out if you have any patients with hnrnp disorders or are willing to learn and welcome families to their clinic!! 

ncbi.nlm.nih.gov/books/NBK58401…

ncbi.nlm.nih.gov/books/NBK57857…