Abby Turnwald (she/her)(@PedsGCAbby) 's Twitter Profile Photo

families, are you in or near Colorado and looking for a summer camp for your loved one? Rocky Mountain Village is my favorite place in the world and camper applications open in January! 4 days/nights filled with never ending fun and laughter!

#Raredisease families, are you in or near Colorado and looking for a summer camp for your loved one? Rocky Mountain Village is my favorite place in the world and camper applications open in January! 4 days/nights filled with never ending fun and laughter!
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Abby Turnwald (she/her)(@PedsGCAbby) 's Twitter Profile Photo

Thinking of all the siblings on National Siblings day. These are some words often used to describe siblings of individuals with rare diseases. What word best describes a sibling in your life?

Thinking of all the #raredisease siblings on National Siblings day. These are some words often used to describe  siblings of individuals with rare diseases. What word best describes a sibling in your life?
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Kim Haney(@KimHaney13) 's Twitter Profile Photo

Thank you 2015 Steele alum Abby Turnwald (she/her) for a fantastic presentation on genetic counseling. Please share your FB page and link to the books your helped write!

Thank you 2015 Steele alum @PedsGCAbby for a fantastic presentation on genetic counseling. Please share your FB page and link to the books your helped write!
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Genetic Counselors(@GeneticCouns) 's Twitter Profile Photo

Siblings witness the impacts of genetic disease but aren’t always included in conversations about genetic risk. We have an opportunity to bridge this gap. Learn more from Tori Suslovitch, MS, CGC and Abby Turnwald (she/her) about the next steps to take: bit.ly/47g6OQB

Siblings witness the impacts of genetic disease but aren’t always included in conversations about genetic risk. We have an opportunity to bridge this gap. Learn more from Tori Suslovitch, MS, CGC and @PedsGCAbby about the next steps to take: bit.ly/47g6OQB #GeneChat
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KAT6 Foundation(@KAT6foundation) 's Twitter Profile Photo

Pediatric Genetic Counselor Abby Turnwald (she/her) wants to hear from you!

Have you received a rare genetic diagnosis for your child in the past 5 years? If so, help us better understand the parent perspective by filling out the survey at the link below! University of Nebraska Medical Center

unmcmmi.co1.qualtrics.com/jfe/form/SV_bx…

Pediatric Genetic Counselor @PedsGCAbby wants to hear from you!

Have you received a rare genetic diagnosis for your child in the past 5 years? If so, help us better understand the parent perspective by filling out the survey at the link below! @unmc

unmcmmi.co1.qualtrics.com/jfe/form/SV_bx…
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SeqComplete(@SeqComplete) 's Twitter Profile Photo

@RareSibStories: 'Meet Abby Turnwald MS, CGC (Abby Turnwald (she/her)). As a genetic counselor, Abby connects with families on their diagnostic journeys. She listens to families' stories, educates about genetic testing… pic.twitter.com/KQTiaWkWz3, see more tweetedtimes.com/search/%23Rare…

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Abby Turnwald (she/her)(@PedsGCAbby) 's Twitter Profile Photo

parents, how often do providers ask how you’re doing? Do you wish they’d ask more? I’m always surprised when I ask a parent and they comment that nobody has asked them before.

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Abby Turnwald (she/her)(@PedsGCAbby) 's Twitter Profile Photo

I’m starting my Christmas list of books written by rare disease families. What are some must adds? I’ve loved and learned a lot from many including Raising a Rare Girl, Schuyler’s Monster, and Chasing My Cure. 🧬🦓

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Abby Turnwald (she/her)(@PedsGCAbby) 's Twitter Profile Photo

families, looking back, what is one thing your wish your provider would’ve said to you the day you received your or your child’s diagnosis?

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Mike Graglia 🌻(@JMGraglia) 's Twitter Profile Photo

In I called out
Abby Turnwald (she/her) and her survey
EveryLife Foundation for the upcoming Rare on the Hill week
Patrick Wild Centre's Andy Stanfield for a great webinar
Simons Searchlight for their updates
ILAE for the webinar

Listen up! podcasts.apple.com/us/podcast/syn…

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BowTiedDad | The Chad Dad(@BowTiedDaddy) 's Twitter Profile Photo

For those of you that know my daughters story, you know her condition is very rare. (Less than 200 cases worldwide)

I will be filling this survey out and if you have a child with a rare condition, please consider filling it out as well.

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Abby Turnwald (she/her)(@PedsGCAbby) 's Twitter Profile Photo

I’m in the midst of planning so many virtual sibling support groups, and conference activities for sibs! It’s exciting to see organizations thinking about ways to incorporate sibs! Is your group wanting to do more for the sibs? Let’s talk!

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Stephanie Fischer(@RarePOV) 's Twitter Profile Photo

Abby Turnwald (she/her) I started a list of awareness days, weeks & months when I was at AllStripes which their team continues to update as a resource for the community since I couldn’t find a comprehensive one. allstripes.com/blog/raising-a… cc Taylor Kane

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Gin Jones(@GiniaJo) 's Twitter Profile Photo

Hey Abby Turnwald (she/her) and Stephanie Fischer here's another awareness day for your database. I'd recommend adding ENPP1 deficiency to the same day (more current name for autosomal recessive hypophosphatemic rickets type2. Need to get the 'rickets' out of the name because it affects adults too).

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