If you don’t already follow Brian Wallach and support I AM ALS (with a donation, retweets, etc.) please consider it. There is no doubt they are making a difference (and that difference is desperately needed).

"For people who are living with rare diseases, this is not going to limit us if we think big!" Amy Klobuchar - Rare Disease Congressional Caucus Briefing #RareDC2021

“Increasing the number of enrollment sites has been done and hasn't worked. Relying on digital advertising and community partnerships has had limited success. It's time to recognize that other issues are at play, and one of them is the cost of participating.” #clinicaltrials

#DeltaVariant surging in U.S. New data show Delta much more contagious than previous versions of #COVID19. Unvaccinated people: get vaccinated & mask until you do. Everyone in areas of substantial/high transmission should wear a mask, even if vaccinated. cdc.gov/coronavirus

KFS Awareness Day! >tinyurl.com/y8392ges KFS? tinyurl.com/mgrbc7x Diagnosed? tinyurl.com/y8vkcwbd Pain Man tinyurl.com/k2yq9qb KFS tests/scans ow.ly/RBQUk & ow.ly/RBQYH Klippel-Feil Syndrome Freedom page tinyurl.com/ycapla4d #raredisease

Tomorrow is KFS Awareness Day! >tinyurl.com/y8392ges What is KFS? tinyurl.com/mgrbc7x Visit Klippel-Feil Syndrome Freedom> tinyurl.com/ycapla4d #raredisease #aware #advocate #patient #parent #treatments #medical #genetic #data Global Genes Patient Worthy SanfordCoRDS

❤️ #kfstrong Klippel-Feil Syndrome Freedom ❤️

Celebrate yourselves today. Our community is fabulous! Share w others about you, your KFS story, your talents & photos. Share what KFS folks need for a full lifetime w/o rare skeletal disease challenges. #raredisease Global Genes SanfordCoRDS ThinkGenetic, Inc. RDLA @ORDR

Today is Klippel Feil Syndrome Awareness Day! Join ThinkGenetic Advocacy Partner Klippel-Feil Syndrome Freedom in spreading the word and building up awareness of this rare genetic condition using #KFStrong

Klippel-Feil Syndrome Awareness Day Timeline 2014 Global Genes >tinyurl.com/ny77d8p7 2015 The Mighty >tinyurl.com/y82fx4f4 2017 Patient Worthy >tinyurl.com/9dwn6dr9 2018 @thinkgenetic >tinyurl.com/3787pabz Annually Klippel-Feil Syndrome Freedom>tinyurl.com/y8392ges #RareDisease

Thank you! Stephanie Fischer

This is fabulous news! Congratulations to our partners! May this provide opportunity for Klippel-Feil syndrome and all #raredisease!

KFS? tinyurl.com/mgrbc7x Diagnosed? tinyurl.com/y8vkcwbd Pain Man tinyurl.com/k2yq9qb KFS tests/scans ow.ly/RBQUk & ow.ly/RBQYH Klippel-Feil Syndrome Freedom page tinyurl.com/ycapla4d #raredisease

KFS research opportunity for those diagnosed! Please participate! More info in your groups below. Adult Patient Group: facebook.com/groups/4062077… Parents Group: facebook.com/groups/8962603… #raredisease #spine #diagnosis #progress Or go to Klippel-Feil Syndrome Freedom on Facebook

Have Klippel-Feil syndrome? In a KFS Freedom support group? Participate in this vital new research! Adult group: tinyurl.com/wkkbwrwd Parents group: tinyurl.com/27vzadcr Enroll in the registry > tinyurl.com/y7fdemtb Klippel-Feil Syndrome Freedom - facebook.com/KlippelFeilSyn… #raredisease

Basket and umbrella #clinicaltrials: untapped opportunities in #raredisease clinicaltrialsarena.com/analysis/baske… via Clinical Trials Arena

There is a significant lack of attention to adults living w #RareDisease in media and, frankly, in the rare community. I was once a child with significant physical and emotional challenges. There might be some lessons to be learned from folks like me. #RareDiseaseTruth

As a #RareDisease patient, do you worry about how you will make money to live when and if your disease progresses beyond what you have done your whole adult life?! I do! #RareDiseaseTruth

It's #RareDiseaseDay KFS? tinyurl.com/mgrbc7x Diagnosed? tinyurl.com/y8vkcwbd KFS tests/scans ow.ly/RBQUk & ow.ly/RBQYH Klippel-Feil Syndrome Freedom page tinyurl.com/ycapla4d #raredisease #spine #rare #research Global Genes National Organization for Rare Disorders (NORD)