#idf2019nc

[akabrat]

Rare across America thank you for this opportunity to speak & share our stories. I was so happy I had my I am a Zebra from the #idf2019nc @rare_advocates #rareacrossamerica #rareacrossamerica19 #idfliason #idfvolunteer #idffoundation #primaryimmunodeficiency #raredisease #susielee thank you @susieleenv for giving us this time to be a voice. https://www.instagram.com/p/B0jyIwpAkqj/?igshid=94c1kd4z8z58

[akabrat]

Checking out a new doctor today to try and have one just in case for those emergency flare ups. Wearing my #zebra pin I got at the #idf2019nc #cvid #cvidlife #wegohealthawards #onedayatatime #advocateforyou #autoimmunedisease #spoonie https://www.instagram.com/p/B0g6qrqALNG/?igshid=5eb2ddtkmahq

[akabrat]

Looking back through photos I can’t believe I forgot to post this photo. I have to say #advocacyday2019 was so much fun with the #idf2019nc it was so great to be a part of such an important time for all of us with #raredisease to speak up and be heard. It was great that @sencortezmasto took the time to listen about HR2507 the new born screen saves lives & continuation of prohibiting an exclusion for preexisting conditions. I look forward in speaking to our legislatures in upcoming events. Being an advocate for your own health is just as important as speaking up for others with similar #raredisease @rare_advocates we are the voice for everyone. Let’s come together and be a change #rareadvocate #advocate #bethechange #zebrastrong #cvid #cvidadvocate #cvidawareness #mctd #rarediseaseday2019 #autoimmune https://www.instagram.com/p/B0Wnozfgouy/?igshid=1cd3762hec89v