#globalgenes

MOST RECENT

#RAREis Verheij Syndrome
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This adorable girl pictured above is Eva. She was born with a rare disease called verheij syndrome. This chromosome abnormality is characterized by delayed psychomotor development, dysmorphic facial features, and skeletal abnormalities.
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To learn more about this rare syndrome visit: https://rarediseases.info.nih.gov/diseases/12814/chromosome-8q243-deletion-syndrome
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Share Your Rare by clicking on the link in our bio.
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@sara.willie #raredisease #raredisorder #verheijsyndrome #careforrare #globalgenes @globalgenes

My dragon swing buddy. 🐲 Cros was a ‘real peach’ at this point, but he willingly joined me on one of my favorite rides because, I’m mommy. After the ride he told me, ‘I never want to do that again!’ 😬 Sorry Cros...you’re a good sport! ❤️ #knottsberryfarm #igetto #acureforcrosby #crosby #googoo #crosberry #birthday #starlightchildrensfoundation #starlightsmiles #kidsofinstagram #morquiosyndrome #chocchildrens #careforrare #rareis #wewillfindacure #love #globalgenes #todayparents #encouragekids #sharethelove #picoftheday #photooftheday #trust #hope #inspire #careaboutrare #sundayfunday #memories

yesterday I had the opportunity to speak on behalf of myself at the Food and Drug Administration #FDA in support of furthering medical options for #achondroplasia. It was a surreal experience to present my stance on the matter to the advisory committee and voting members who have the power to make a #change for children who may benefit from this option.
My platform is that everyone should have a #choice. As a young woman who carries the #FGFR3 gene that causes achondroplasia, I want options for future children I may have. These new #pharmaceutical trials need to be open to infants for best #results. There is controversy surrounding this research. Someone with a different viewpoint shouldn’t be able to limit your choices. #youdoyou thank you @globalgenes for providing my travel
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#chanstagram #instachan #growingstronger #globalgenes #ellewoodsmoment

Introducing Sam’s Wine!! Because why limit 100% giveback to just one week!?! Every time someone purchases this wine from me, I will give 100% of my commission to Sam! Not just today, not just this week, but forever until we no longer carry this varietal! (Plus the cause partner is Global Genes which funds research for rare diseases, including OI!!) Order now by using the link in my profile! 🍷❤️🌎

#RAREis My Rare And My Family
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“This is a photo of my family. That is what rare is to me! Having that support system, knowing they will be there for me no matter what.
My wife, Diana, is standing beside me like she has always done. My daughter, Savannah, is sitting in the chair ready to catch me when I am ready to fall. “
-Frank Rivera, President of Sarcoidosis of Long Island
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Sarcoidosis is the growth of tiny collections of inflammatory cells in different parts of your body. These tiny collections of cells are most commonly found in the lungs, lymph nodes, eyes and skin.
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To learn more about this rare disorder or Sarcoidosis or Long Island visit: www.sarcoidosisofli.org<http://www.sarcoidosisofli.org>
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Share Your Rare by clicking on the link in our bio.
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@frankr311 #raredisease #raredisorder #careforrare #sarcoidosis #rarediseases #family #love #awareness #globalgenes @globalgenes

New Summer Sweet Wines are here!!!!
I can't wait to try them out! They went in the wine fridge right after this picture was taken!
And how awesome is that they benefit Alex’s Lemonade Stand, Global Genes, and Room to Read!
Who wants a taste? 😘

#ONEHOPE
#ONEHOPE4good
#alexslemonadestand
#globalgenes
#roomtoread
#muscatcanelli
#muscat
#riesling
#gewurztraminer
#northcoast
#monterreycounty

The last thing this table needs is one of our new summer release wines! Hot weather and great company only gets better with refreshments! Now available - purchase from link in profile! #gewürztraminer #muscat #riesling #wineforacause @alexslemonadestand #roomtoread #globalgenes @onehope

Overwhelming gratitude, joy-filled heart, eyes brimming with tears and love for my little warrior and her incredible team who are literally by her side each step of the way...
#evamagoo #babysteps #bpanwarriors #globalgenes #nord #raredisease #onestepatatime #looknohands

BRAND NEW : 2017 Monterey County Reserve Gewurztraminer
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Every case funds one on one genetic counseling support for a rare disease patient.
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Lychee, passionfruit, honey, spice

Exotic fruit and spice aromas with honey notes.

Exotic lychee and passionfruit aromas with hints of spice. The mouthfeel is full of flavor with honey like finish.
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Acidity: Soft
Body: Medium
Sweetness: Sweet
Alcohol: 12.2%
closure: cork
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Website in bio ➡️ @winewithbrandi
#gewurztraminer #traminer #raredisease #globalgenes #curerarediseases #monterey #montereycounty #montereywines #montereycountywine #whitewine #sweetwine #suitespring #suiteheartland #winelife #winelady #boymom #momlife #momofboys #winedrinker #thirstythursday

Thrilled to announce three new reserve white wines- just in time for summer! Backyard soire'e anyone?? #winetastings #winenot #impact #alexlemonade #globalgenes #roomtoread #sipdogoodrepeat

Three cheers for Summer 🥂
Introducing our new Reserve whites, just in time for Summer entertaining, and relaxing! Better yet, each bottle supports our cause partners, @globalgenes, @alexslemonade
@roomtoread
Shop to it!
Link in bio to purchase our new Reserve Monterey County Riesling, Reserve Monterey Gewurztraminer, and Reserve North Coast Muscat 👌

#pourwithpurpose
#summerishere
#sipsthatgiveback
#bettertogether
#globalgenes
#helpfundgeneticounseling
#alexslemonadestand
#fundpediatriccancerresearch
#roomtoread
#helpincreaseliteracy
#dogooddrinkgood
#winenot
#makeanimpact
#cheers

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