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It’s exciting to be at Amicus Therapeutics Amicus Therapeutics with the new #genetherapy pipeline

Thank you RDLA RDLA for bringing together advocates from so many rare diseases. The challenges and policy solutions have more in common than the differences in diagnosis.

Looking forward to joining in on Sunday #1FDSM

I am looking forward to the Global Genes June 13 webinar on #raredisease and Precision Medicine. You can sign up to participate at globalgenes.org/event/rare-web…

Congratulations to the Global Genes Rare Champion of Hope Awardees globalgenes.org/rare-champion-… #raredisease

I just endorsed Stephanie Fischer for the #WEGOHealthAwards. Check out this #PatientLeader’s profile and you’ll see why awards.wegohealth.com/nominees/18209

I just endorsed another deserving patient leader, Nadia for the #WEGOHealthAwards. Check out this #PatientLeader’s profile and you’ll see why awards.wegohealth.com/nominees/18173

Want to let folks know that EveryLife Foundation has opened its Rare Artist Contest #rareartist2019. To submit go to rareartist.org.

Thank you Lakeland Electric! Appreciate you getting to the neighborhood so fast and working 5 hours into the night to get the power back on.

ICER discriminates against people with rare diseases sfexaminer.com/opinion/icer-d…

I just signed up to volunteer for the dEBra of America conference. I hope others will join me in Atlanta in mid July! debra.salsalabs.org/REGISTERTOBEAV…

So pleased to be welcomed as a new member of the Rare Advocacy Movement #rareadvocacy. RAM is a network of rareLeaders dedicated to the growth and advancement of, not only their own disease specific communities but, the overall rare disease community. rareadvocacymovement.com

Check out my latest article: Rare Disease and Health Equity linkedin.com/pulse/rare-dis… via LinkedIn

Thanks Willarda for sharing. Great guideposts for people like me. The whole situation is devastating and pains anyone with heart and conscience. I, who really want to help make change do now, am at a loss to what I can do.

I’d like to believe that after more than fifty years tirelessly fighting for civil rights in USA, God said to CT Vivian and John Lewis “You can rest knowing the next generation of leaders is here to take us to the finish line.”

Rename the Edmund Pettus Bridge the John Lewis Bridge. Retweet if you agree.

Worth the read ... Being part of the conversation: Turning patient engagement to patient centricity pharmaphorum.com

Eddie Vedder’s new single and video raises awareness for skin disorder thesudburystar.com/entertainment/…

If you play poker, have some fun for a great cause...

Thank you to the medical professionals taking time to call bullsh*t on this statement. Prior authorizations exist to try to save money, not to protect patients. Let physicians decide the best treatment for their patients without adding bureaucratic hurdles.