Join us this weekend for our 2017 planning session!

MEETING INFORMATION: THIS WEEKEND!

Saturday January 28th 2pm – 4:30pm

Warwick Public Library

Small Meeting Room

600 Sandy Lane Warwick, RI

 

TOPIC: Our first meeting of 2017 kicks off with a planning session for the year ahead. This will be a workshop style meeting; we want your input! We will be asking our members what speakers/topics we want to focus on in 2017. We will also talk about the different conferences happening in 2017, plan May awareness events and share upcoming advocacy opportunities.

We will be meeting in the SMALL meeting room this month!

Come learn about EDS, make some friends and help us plan 2017 to make it our best year yet!

OTHER UPDATES:

  1. Rare Disease Day is February 27th!
  2. RDLA is hosting a Rare Disease Week in Washington DC Events from Feb 27th to March 2nd including a conference, Lobby day and a Rare Artist Reception that features one of our own members, Kayla McEvoy! You can see her submission here: http://www.rareartist.org/portfolio/zebras-matter/ Find out more about Rare Disease Week in DC here: http://rareadvocates.org/registration-now-open-for-rare-disease-week-on-capitol-hill/
  3. One of the events in DC will be a rally at the NIH, I’ll be asking for T-Shirt designs from our members for an Awareness T-Shirt to wear for the event, I will be there representing rare disease patients in RI, I’d love an EDS focus but with the other rare co-morbids as well, let’s see what you guys come up with! (feel like making a design to try it out? TeeSpring and vista print both have easy to use tee shirt design programs)
  4. Along with Rare Disease Day February also brings us Marfan Awareness month, please consider helping raise awareness for our sister condition next month. The Marfan Foundation always has wonderfully informative posts to share all month long.
  5. OUR NEXT MEETING AFTER THIS WEEKEND IS FEBUARY 18TH 2PM SMALL MEETING ROOM 600 SANDY LANE WARWICK RI

I hope to see you this weekend at the meeting, but if for any reason you aren’t able to attend but would still like to share your ideas and goals for the year ahead you can email me any time krista@rieds.org

LET’S START THINKING ABOUT MAY AWARENESS ACTIVITIES NOW! SEND YOUR IDEAS TO krista@rieds.org OR POST THEM ON FACEBOOK!

Would you like to be on our May Awareness Committee? You only need the desire to raise awareness in order to help, materials will be provided!

You are all so important to this group, I couldn’t be happier with our group and how we are here to help each other and find support together, I thank you all for joining us for another year!

Krista Brack

Krista@rieds.org

www.rieds.org

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