#CoRDSchat Transcript, Healthcare Social Media Transcript
Our chat took place in between Fri Aug 30 0:00:00 PDT 2013 and Fri Aug 30 23:00:00 PDT 2013.

 

SanfordCoRDS

Join us today for the #CoRDSChat with @GlobalGenes! Learn more about their project at noon Central! https://t.co/TsRbyS1jq4

Fri Aug 309:30:16 PDT 2013

GlobalGenes 30 min to #CoRDSChat! If you’re #raredisease organization, you’re welcome to join. Just add the hashtag #CoRDSChat your tweets!

Fri Aug 309:31:23 PDT 20139/2/13

SanfordCoRDS

Today we are going to do a Q & A with Carrie Ostrea of @GlobalGenes! #CoRDSChat

Fri Aug 309:54:22 PDT 2013

SanfordCoRDS

I’ll prompt Questions “Q1 Q2 etc”. When Qs are opened up to the group, Type “Q1, Q2” in front of msg. Include #CoRDSChat in your tweet!

Fri Aug 309:57:52 PDT 2013

SanfordCoRDS

We will assume all tweets during the chat during the chat are your own & not your employers (unless specifically declared). #CoRDSChat

Fri Aug 309:58:41 PDT 2013

SanfordCoRDS

When it comes to #rarediseases, there are many challenges – In #CoRDSChat we will highlight rare disease org and the important work they do.

Fri Aug 3010:00:27 PDT 2013

starrangel4 #CoRDSChat I have KFS, and a tethered spinal cord I just wanted to know is there any new pain management I can look in to.

Fri Aug 3010:00:45 PDT 2013

SanfordCoRDS

Remember to add the hashtag #CoRDSChat to your tweets, so others can see them!

Fri Aug 3010:00:59 PDT 2013

premierresearch Dipping into the #CoRDSChat about #raredisease, can’t wait to hear (read?) what @GlobalGenes has to say today!

Fri Aug 3010:01:18 PDT 2013

SanfordCoRDS

It’s Noon CST! Welcome to #CoRDSChat! Who’s in the audience today? Please introduce yourself/your organization! 9/2/13 #CoRDSchat – Healthcare Social MediaTranscript hashtags.symplur.com/healthcare-hashtag-transcript.php?hashtag=CoRDSchat&fdate=08-30-2013&shour=0&smin=0&tdate=08-30-2013&thour=23&tmin=0&… 3/10

Fri Aug 3010:01:50 PDT 2013

premierresearch RT @SanfordCoRDS: When it comes to #rarediseases, there are many challenges– In #CoRDSChat,we will highlight rare disease org and the important work they do.

Fri Aug 3010:01:50 PDT 2013

SanfordCoRDS

Today’s #CoRDSChat will focus on @GlobalGenes, an organization supporting #raredisease #patients!

Fri Aug 3010:02:41 PDT 2013

SDFatPhRMA RT @SanfordCoRDS: When it comes to #rarediseases, there are many challenges In #CoRDSChat we will highlight rare disease org and the important work they do.

Fri Aug 3010:02:44 PDT 2013

GlobalGenes Thank you for having us on your chat! #CoRDSChat

Fri Aug 3010:03:14 PDT 2013

SanfordCoRDS

Today #CoRDSChat features a Q&A with Carrie Ostrea of @GlobalGenes!

Fri Aug 3010:04:09 PDT 2013

SDFatPhRMA RT @SanfordCoRDS: Today’s #CoRDSChat will focus on @GlobalGenes, an organization supporting #raredisease #patients!

Fri Aug 3010:04:10 PDT 2013

mvennitti Hi stopping by to support #CoRDS, @globalGenes and our rare patients and organization. Marianne, Alliance for Cryoglobulinemia #CordsChat

Fri Aug 3010:04:21 PDT 2013

SanfordCoRDS

Thank you for joining us Carrie! #CoRDSChat

Fri Aug 3010:04:27 PDT 2013

SanfordCoRDS

We’ll get started in a minute with the Q & A. Please stick around for the comments as we open up the discussion. #CoRDSChat

Fri Aug 3010:05:01 PDT 2013

starrangel4 #CoRDSChat my name is starrla I have KFS with tethered spinal cord diagnosed at 42. Heart is also backwards and on the wrong side

Fri Aug 3010:05:33 PDT 2013

SanfordCoRDS: We’ll get started in a minute with the Q & A. Please stick around for the comments as we open up the discussion. #CoRDSChat

Fri Aug 3010:05:36 PDT 2013

mvennitti Nice to meet you Starrla. Hope you find the chat informative. #CordsChat

Fri Aug 3010:07:15 PDT 2013

starrangel4 #CoRDSChat what is the best way to manage pain. I currently take 10 Vicodin 10/325 a day I feel this is not effective and way to much !9/2/13 #CoRDSchat – Healthcare Social MediaTranscript hashtags.symplur.com/healthcare-hashtag-transcript.php?hashtag=CoRDSchat&fdate=08-30-2013&shour=0&smin=0&tdate=08-30-2013&thour=23&tmin=0&… 4/10

Fri Aug 3010:08:24 PDT 2013

mvennitti @premierresearch I know you will be impressed with the newest work by @globalgenes for #rarediseases #CordsChat

Fri Aug 3010:08:58 PDT 2013

starrangel4 #CoRDSChat nice to meet you too.

Fri Aug 3010:09:03 PDT 2013

GlobalGenes It is great to talk to all of you. #CoRDSChat

Fri Aug 3010:09:24 PDT 2013

SanfordCoRDS Alright, let’s get started with the questions! #CoRDSChat

Fri Aug 3010:09:47 PDT 2013

SanfordCoRDS Q1- How did @GlobalGenes get started? #CoRDSChat

Fri Aug 3010:10:22 PDT 2013

GlobalGenes Q1- NicoleBoice created GG because of lack of awareness for #raredisease when her friend’s son was diagnosed with a rare disorder #CoRDSChat

Fri Aug 3010:10:47 PDT 2013

starrangel4 #CoRDSChat I would also love to get involved with any new studies that could shed light in KFS rare skeletal syndrome.

Fri Aug 3010:11:00 PDT 2013

SanfordCoRDS Q2- Tell us about your upcoming Patient Advocacy Summit! #CoRDSChat

Fri Aug 3010:13:33 PDT 2013

premierresearch @mvennitti @GlobalGenes Cool. Always looking 4 great new stories 2 share with Twitter & LinkedIn folks, as well as our own employees! #CoRDSChat

Fri Aug 3010:13:35 PDT 2013

GlobalGenes Q2- “From Symptom to Cure: Journey of a Rare Disease Advocate. All-day conference with top experts in the #raredisease community. #CoRDSChat

Fri Aug 3010:13:49 PDT 2013

GlobalGenes Q2- In-person and live webcast available. Caregiving, fundraising, drug dev, collaboration, dealing with FDA, research, etc. #CoRDSChat

Fri Aug 3010:13:55 PDT 2013

GlobalGenes Q2- 9/20/2013. Patient Advocacy Summit agenda and registration (in-person and free live webcast) at https://t.co/5dvWvc64c2 #CoRDSChat

Fri Aug 3010:14:08 PDT 20139/2/13 #CoRDSchat – Healthcare Social MediaTranscript

hashtags.symplur.com/healthcare-hashtag-transcript.php?hashtag=CoRDSchat&fdate=08-30-2013&shour=0&smin=0&tdate=08-30-2013&thour=23&tmin=0&… 5/10

SanfordCoRDS .@GlobalGenes Looks like it will be a great event! #CoRDSChat

Fri Aug 3010:15:50 PDT 2013

premierresearch .@GlobalGenes Lack of awareness & need to educate – cornerstones of #raredisease. It’s why orgs such as yours are so vital. #CoRDSChat

Fri Aug 3010:15:53 PDT 2013

AfternoonNapper RT @GlobalGenes: Q2- 9/20/2013. Patient Advocacy Summit agenda and registration (in-person and free live webcast) at https://t.co/5dvWvc64…

Fri Aug 3010:16:13 PDT 2013

GlobalGenes The line-up of panelists we are bringing in is very exciting! We will be posting them online next week. #CoRDSChat

Fri Aug 3010:17:11 PDT 2013

mvennitti RT @GlobalGenes The line-up of panelists we are bringing in is very exciting! We will be posting them online #CoRDSChat #cordschat

Fri Aug 3010:18:22 PDT 2013

SanfordCoRDS Q3- Switching gears, how did the RARE Meetups come to be? #CoRDSChat

Fri Aug 3010:18:23 PDT 2013

GlobalGenes Q3- Meetups were created to bring local patients and caregivers with #rarediseases together to share, vent, learn, and socialize. #CoRDSChat

Fri Aug 3010:18:34 PDT 2013

GlobalGenes Q3- Although they may have different #rarediseases, many of their experiences, resources, and frustrations are similar. #CoRDSChat

Fri Aug 3010:18:41 PDT 2013

SanfordCoRDS Q4- What are the future plans for @GlobalGenes Project? #CoRDSChat

Fri Aug 3010:20:43 PDT 2013

GlobalGenes Q4- At our summit, we will be introducing of our detailed and interactive #raredisease toolkits. Will be available to everyone. #CoRDSChat

Fri Aug 3010:20:55 PDT 2013

GlobalGenes Q4- We also are planning more educational webinars, town halls with experts, support groups, outreach programs, expert articles…#CoRDSChat

Fri Aug 3010:21:04 PDT 2013

GlobalGenes Q4- Thanks to the support of the #raredisease community, our org is growing. We have so many exciting things coming up for 2014! #CoRDSChat

Fri Aug 3010:21:11 PDT 2013

SanfordCoRDS MT@GlobalGenes Q4-We are planning more ed. webinars, town halls with experts, support groups, outreach programs, expert articles. #CoRDSChat

Fri Aug 3010:23:28 PDT 2013

SanfordCoRDS RT @GlobalGenes Lack of awareness & need to educate – cornerstones of #raredisease. It’s why orgs such as yours are so vital. #CoRDSChat

Fri Aug 3010:23:28 PDT 2013

PennyRaffles RT @GlobalGenes: Q2- In-person and live webcast available. Caregiving, fundraising, drug dev, collaboration, dealing with FDA, research, et…

Fri Aug 3010:23:45 PDT 2013

thecancerian1 RT @GlobalGenes: The line-up of panelists we are bringing in is very exciting! We will be posting them online next week. #CoRDSChat

Fri Aug 3010:24:04 PDT 2013

SDFatPhRMA RT @GlobalGenes: Q4- At our summit, we will be introducing of our detailed and interactive #raredisease toolkits. Will be available to eve…

Fri Aug 3010:24:14 PDT 2013

GlobalGenes We all need to work together to make real changes. RT @premierresearch . that’s why orgs such as yours are so vital. #CoRDSChat

Fri Aug 3010:24:16 PDT 2013

SanfordCoRDS Any questions for @globalgenes from the audience? #CoRDSChat

Fri Aug 3010:24:26 PDT 20139/2/13 #CoRDSchat – Healthcare Social MediaTranscript

mvennitti RT @GlobalGenes: Q4- We also are planning more educational webinars, town
halls with experts, support groups, outreach programs, expert art…

Fri Aug 3010:24:30 PDT 2013

SDFatPhRMA @GlobalGenes The #raredisease toolkits will be a great resource! #CoRDSChat

Fri Aug 3010:24:59 PDT 2013

GlobalGenes The toolkits are a truly collaborative effort between industry, patients, foundations, and our community. @SDFatPhRMA #CoRDSChat

Fri Aug 3010:26:18 PDT 2013

SanfordCoRDS @GlobalGenes What #raredisease conferences & other events are on your radar for the remainder of the year? #CoRDSChat

Fri Aug 3010:26:48 PDT 2013

premierresearch RT @GlobalGenes: The toolkits are a truly collaborative effort between industry, patients, foundations, and our community. @SDFatPhRMA #CoRDS

Fri Aug 3010:27:03 PDT 2013

SanfordCoRDS @GlobalGenes can you share with us the topic for the summit #cordschat

Fri Aug 3010:27:05 PDT 2013

RheumyRosie .@GlobalGenes Can’t wait for the toolkits! Who are you recognizing at the Tribute to Champions of #Hope Gala this year? #CoRDSChat

Fri Aug 3010:27:15 PDT 2013

mvennitti RT @GlobalGenes: Q4- At our summit, we will be introducing of our detailed and interactive #raredisease toolkits.

Fri Aug 3010:27:41 PDT 2013

mvennitti RT @GlobalGenes: The toolkits are a truly collaborative effort between industry, patients, foundations, and our community. @SDFatPhRMA #CoRDS

Fri Aug 3010:27:52 PDT 2013

GlobalGenes @Mvennetti You can view the agenda at https://t.co/Jpd6h4Fb3b – these topics will help every advocate from new diagnosed to expert #CordsChat

Fri Aug 3010:28:35 PDT 2013

mvennitti @GlobalGenes I wanted to applaud you on the work you have accomplish for the #raredisease world #cordschat

Fri Aug 3010:30:44 PDT 2013

GlobalGenes @RheumyRosie We have 10 awards this year including Dr Steve Groft (ORDR), Rick Guidotti, and Josh Sommer. https://t.co/hVAIZAkAPF #Cordschat

Fri Aug 3010:31:19 PDT 2013

SDFatPhRMA RT @mvennitti: @GlobalGenes I wanted to applaud you on the work you have9/2/13 #CoRDSchat – Healthcare Social MediaTranscript

Fri Aug 3010:31:38 PDT 2013

mvennitti @GlobalGenes I’ll be sure to share the link #CoRDSChat

Fri Aug 3010:31:46 PDT 2013

mvennitti RT @GlobalGenes: @Mvennetti You can view the agenda at https://t.co/Jpd6h4Fb3b – these topics will help every advocate from new diagnosed to…

Fri Aug 3010:31:49 PDT 2013

GlobalGenes @mvennitti Thank you, Marianne. It is because of the support from advocates like yourself that we can make a difference. #CoRDSChat

Fri Aug 3010:32:01 PDT 2013

SanfordCoRDS It is 12:30 and time to wrap up! Many thanks to all who joined in today. Please feel free to stay & chat! #CoRDSChat

Fri Aug 3010:32:33 PDT 2013

SDFatPhRMA @mvennitti I agree! Nicole & the entire team at @GlobalGenes are fantastic, true assets to the #raredisease community #CoRDSChat

Fri Aug 3010:32:49 PDT 2013

RheumyRosie RT @GlobalGenes: @RheumyRosie We have 10 awards this year including Dr. Steve Groft (ORDR), Rick Guidotti, and Josh Sommer. https://t.co/hVA…

Fri Aug 3010:32:56 PDT 2013

GlobalGenes Thank you for having me! If anyone has any questions, please email me at carrieo@rareproject.org #CoRDSChat

Fri Aug 3010:32:59 PDT 2013

RheumyRosie RT @mvennitti: @GlobalGenes I wanted to applaud you on the work you have accomplish for the #raredisease world #cordschat

Fri Aug 3010:33:02 PDT 2013

RheumyRosie RT @GlobalGenes: @Mvennetti You can view the agenda at https://t.co/Jpd6h4Fb3b – these topics will help every advocate from new diagnosed to…

Fri Aug 3010:33:06 PDT 2013

mvennitti RT @SDFatPhRMA: @mvennitti I agree! Nicole & the entire team at @GlobalGenes are fantastic, true assets to the #raredisease community #CoRDS

Fri Aug 3010:33:24 PDT 2013

SanfordCoRDS MT@SDFatPhRMA@mvennitti I agree! Nicole &the entire team at @GlobalGenes are fantastic true assets to the #raredisease community #CoRDSChat

Fri Aug 3010:33:54 PDT 2013

RheumyRosie RT @GlobalGenes: Thank you for having me! If anyone has any questions, please email me at carrieo@rareproject.org #CoRDSChat

Fri Aug 3010:34:14 PDT 20139/2/13

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