PURASyndrome

Raising awareness of #PURAsyndrome to further research and support individuals with this #RareDisease

[PURASyndrome @PURASyndrome]

Join us in improving the quality of life for our kids with @PURASyndrome by supporting families + furthering research for this #RareDisease

[PURASyndrome @PURASyndrome]

We are still looking for sponsors for the 4th Annual PURA Syndrome Conference Boston USA June 2019! Do you work for or know of an amazing company that might be willing to help sponsor our event? Take a look at our... https://t.co/I7ajqF3X1N

[PURASyndrome @PURASyndrome]

Thank you Mel and Ceciel! https://t.co/ctpQtkqw4O

[PURASyndrome @PURASyndrome]

The agenda for the 4th Annual PURA Syndrome Conference has been finalized! We are thrilled to welcome many members of the Global Research Network who will present during Saturday sessions. Sunday will be packed with valuable... https://t.co/HYZK1gXdIq

[PURASyndrome @PURASyndrome]

Enrollment in the EEG Research Study will end on April 19th, 2019. It is not too late to enroll in the study or to contact researchers for additional information.

An EEG (electroencephalogram) is a test used to find problems related to... https://t.co/YY5XNLaQzE

[PURASyndrome @PURASyndrome]

It was A PURA Perfect Night in Chicago last night. Thank you to all who came out to support us and our Chicago families! And we want to give a huge shoutout and thank you to all of our Chicago families who... https://t.co/AFT1WxBCn7

[PURASyndrome @PURASyndrome]

Just getting set up for A PURA Perfect Night in Chicago! Come on out and purchase your ticket at the door! Or, participate in our online silent auction until 9:15pm! https://t.co/06PSpjvasv

[PURASyndrome @PURASyndrome]

Hurry and place a bid on a gorgeous art piece from the silent auction for A PURA Perfect Night! So many talented artists contributed to our auction. Placing a bid takes just a few minutes and Biddingowl... https://t.co/zR5WjjVmi3

[PURASyndrome @PURASyndrome]

We have many one-of-a-kind items featured in the 3rd Annual PURA Perfect Night in Chicago silent auction like this handmade quilt... https://t.co/vHJ7RrcFeT

[PURASyndrome @PURASyndrome]

Welcome to Amanda Shanks! | PURA syndrome - PURA gene https://t.co/obRpaKGSeO

[PURASyndrome @PURASyndrome]

We are thrilled that over 60 families will be participating in the PURA Syndrome EEG Research Study! Just a reminder that enrollment for this study will conclude on Friday, April 19th, 2019 and it is not too late to enroll. The point of... https://t.co/YY5XNLaQzE

[PURASyndrome @PURASyndrome]

Thank you to Sense for donating to the silent auction for the 3rd Annual PURA Perfect Night in Chicago on April 12th, 2019. Sense "installs into your home's electrical panel and provides insight into your energy use and home activity through IOS,... https://t.co/gtrHjVYLHR

[PURASyndrome @PURASyndrome]

A PURA Perfect Night is just two weeks away! Go ahead and snag your tickets today and join us for a fantastic silent auction and live music while supporting the PURA Syndrome Foundation.... https://t.co/ddcahlFODI

[PURASyndrome @PURASyndrome]

Who will be joining The PURA Syndrome Foundation and members of the Global Research Network on June 21st for the 4th Annual PURA Syndrome Conference Boston USA June 2019? We look forward to this event every year as... https://t.co/JOeBHNCiCj

[PURASyndrome @PURASyndrome]

We are just three weeks away from A PURA Perfect Night in Chicago! We invite you to join us at the Greenhouse Loft for a night filled with food, music, and an amazing silent auction. We are also excited to... https://t.co/z1Yg6BL7wp

[PURASyndrome @PURASyndrome]

Help us reach our goal!! We have LOTS of families who have created personal fundraisers this year, but we are just $320 away from reaching our general campaign goal for World Rare Disease Day.... https://t.co/ArDqBoAIWH

[PURASyndrome @PURASyndrome]

Today is the day! WORLD RARE DISEASE DAY!!! Show YOU care for RARE by donating to the PURA SYNDROME FOUNDATION today! #ShowYourRare #ShowYouCare Make a donation in honor of your loved one with... https://t.co/ArDqBoAIWH

[PURASyndrome @PURASyndrome]

To all of our friends in Chicago and surrounding areas,

Will you join us for a #PURAPerfect Night in Chicago on Friday, April 12, 2019? We have a lovely evening planned with food, drinks, music, and a fantastic... https://t.co/cIIK1QrMQh

[PURASyndrome @PURASyndrome]

Less than 20 days to go until World Rare Disease Day! PURA Syndrome affects less than 300 individuals worldwide. How do you plan to #ShowYourStripes? Please consider showing you care for rare by... https://t.co/ArDqBoAIWH

[PURASyndrome @PURASyndrome]

Conference registration and accomodation hotel bookings for the 2019 conference in Boston, USA, are now open. For details and links to book, please see the PURA syndrome website link below.
https://t.co/HYZK1gXdIq https://t.co/HYZK1gXdIq

[PURASyndrome @PURASyndrome]

Only 30 days before World Rare Disease Day 2019! Join the PURA Syndrome Foundation in celebrating World Rare Disease Day on February 28th, 2019! Show you care by donating to rare and consider... https://t.co/ArDqBoAIWH