#PatientsHavePower Transcript
Healthcare social media transcript of the #PatientsHavePower hashtag.
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See #PatientsHavePower Influencers/Analytics.
| Profile | Tweet |
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 | M&B Sciences @mbsciencesinc Welcome to the February #PatientsHavePower Twitter chat on genetic testing in honor of #RareDiseaseDay coming up on February 28! |
| M&B Sciences @mbsciencesinc It’s time to introduce yourself while we send out a few friendly reminders about how the chat will work! #PatientsHavePower |
 | Evan Ehrenberg @EvanEhrenberg RT @Clara_Health: Welcome to the February #PatientsHavePower Twitter chat on genetic testing in honor of #RareDiseaseDay coming up on February 28! |
| M&B Sciences @mbsciencesinc We will be using a Q1 A1 format with 6 questions and time for closing thoughts! #PatientsHavePower |
| M&B Sciences @mbsciencesinc Remember to include #PatientsHavePower in your Tweets. |
 | Ross @Rossco006 @Srotberg15 @Clara_Health @GlobalGenes @RieOfLetters @angelee828 @lisadbudzinski @mollyschreiber @RarePOV @Purrfectly_Rare @SarcoidosisofLI @SavannaBraun Well that’s to bad because the time doesn’t work for me then! Will have to read through later then! #PatientsHavePower |
| M&B Sciences @mbsciencesinc This Twitter Chat was made possible by the financial support of Clara Health and Enzyvant. All thoughts, opinions and comments expressed here are chat participants’ own, and not necessarily those of Clara Health and Enzyvant. #PatientsHavePower |
 | Frank R. @SarcoidosisofLI @Clara_Health Hi my name is Frank Rivera. I have a rare disease called Sarcoidosis and I also have Parkinson's. I advocate for those who can't fight for themselves. #PatientsHavePower |
 | ISurvivor Lisa Deck @lbdeck Thrilled to be here for the #PatientsHavePower chat in honor of #RareDiseaseDay. I’m a #Moyamoya patient, #stroke survivor and #hearthealth advocate! |
 | Ken Taylor, RPIC @KenRayTaylor Hello, i am @kenraytaylor living in the desert outside of Phoenix AZ, VP of iPain @iPainFoundation #PatientsHavePower |
 | Emily Morgan, MPH, CHES @EmMorgan27 @Clara_Health Hello! I’m Emily, an ulcerative colitis patient and current MPH student. #PatientsHavePower Currently in a working session so will contribute as I can! Happy to be here 😊 |
 | Barby Ingle Official @BarbyIngle Welcome, I am a pain patient, author, speaker, @brkthrough_crew ambassador and so much more. Check out https://t.co/aBxf3J6RF6 for more on me. #PatientsHavePower #genetictesting https://t.co/YaBrQ64KLu |
 | Seth Rotberg @Srotberg15 Hi everyone! Seth here from DC, but originally from outside of Boston (Go Pats!). Come from a family impacted by Huntington’s Disease and often share my genetic testing story with others. #PatientsHavePower |
 | Marni Cartelli @Purrfectly_Rare #patientsHavePower Hi! Marni here from NY-just got back from a #CRPS support group meeting so currently a mixed bag of emotions But mostly glad I managed to remember to make this chat! |
| Seth Rotberg @Srotberg15 @BarbyIngle Nice to hear from you Barby! #PatientsHavePower |
| M&B Sciences @mbsciencesinc Q1: Have you or anyone you know gone through genetic testing? Why? #PatientsHavePower https://t.co/AgiG5Gl1nh |
 | Alan Brewington @abrewi3010 Alan here. Both dad and grandma were thought to have Parkinson’s before they died. Should I be tested to see if it’s genetic? Just let my life get play out? #caregiver #patientshavepower |
| M&B Sciences @mbsciencesinc A1: @Brkthrough_Crew Ambassador Erika was confident she had a rare disease called Ehlers-Danlos Syndrome and pushed to get genetic testing done so that she could receive the diagnosis and get proper treatment. Listen to her story: https://t.co/7GkbhEhBEa #PatientsHavePower |
| Alan Brewington @abrewi3010 A1 I have not had any genetic testing and I don’t think I know anyone that has #patientshavepower |
 | Mary MACK @MaryOCMack Hi, Yes, had genetic testing due to heart issues. Just now joining from Massachusetts #PatientsHavePower |
| Seth Rotberg @Srotberg15 A1 At the age of 20 I went through genetic testing because I was tired of living with the unknown. I have many friends who have also tested and always tell people it’s a personal decision and an extremely difficult one to make. #PatientsHavePower |
| Barby Ingle Official @BarbyIngle A1. Yes, I myself have undergone genetic testing 3 times so far Have another test coming up, each test looked at different aspects of my genes. 1st time I did it on my own 4 fun, 2-3x through genetic doctor & now getting ready 2 do more inclusive test #PatientsHavePower |
| Frank R. @SarcoidosisofLI @Clara_Health Q1 A1- I did. The reason I did is because Sarcoidosis doesn't only have a cure, but it doesn't even have a cause. So I am hoping taking a genetic test would help in the research of my disease. #PatientsHavePower |
| Emily Morgan, MPH, CHES @EmMorgan27 A1: Interestingly enough I think there’s a gap in knowledge regarding what exactly genetic testing entails! I’ve sent a saliva sample to 23&me but not by a clinical provider. Two Aunts on my mothers side have been tested for the BRCA1 gene. #PatientsHavePower |
| Marni Cartelli @Purrfectly_Rare A1.#patientsHavePower I have underwent genetic variability testing for medication purposes CYP-450 (don't know if that counts) when my pain wasn't being controlled by typical pharmacologic means. They wanted to make sure I wasn't having problems breaking down the meds |
| Seth Rotberg @Srotberg15 @abrewi3010 Alan that’s a tough question but also should be based on your decision. Perhaps look into connecting with a genetic counselor to make sure you have the right resources. Also reach out to a patient advocacy org too. #PatientsHavePower |
| Ken Taylor, RPIC @KenRayTaylor A1: My wife @BarbyIngle has gone through genetic testing for personal curiosity and again later after dx. It was informative and should be covered by insurance. It gives answers to the unexplained questions floating in your head and body. #PatientsHavePower |
| M&B Sciences @mbsciencesinc Q2: What are the benefits/drawbacks of genetic testing? #PatientsHavePower https://t.co/j1peYrGpEd |
| Alan Brewington @abrewi3010 @Srotberg15 Thank you! First I need to get through my upcoming neck surgery then I can concentrate on this decision. #patientshavepower |
| Frank R. @SarcoidosisofLI @abrewi3010 I agree with @Srotberg15 that is truly a one on one basis. I just had mine done again due to my new Parkinson's condition last year. I am also having my daughter tested. #PatientsHavePower |
| M&B Sciences @mbsciencesinc A2: Genetic testing can help patients receive a proper diagnosis and help inform doctors on the best path for treatment. #PatientsHavePower |
| M&B Sciences @mbsciencesinc A2: However, genetic testing also has the potential to take an emotional toll on the tested person if the results are unfavorable or unexpected. #PatientsHavePower |
| Alan Brewington @abrewi3010 A2 I’m worried I would live through my test results vs living for my own quality of life. #patientshavepower |
| Mary MACK @MaryOCMack T2. Benefits are confirming or ruling out a suspected diagnosis. Drawbacks are possible discrimination, health insurance issues, life insurance... #PatientsHavePower |
| Emily Morgan, MPH, CHES @EmMorgan27 RT @Clara_Health: A2: A2: Genetic testing can help patients receive a proper diagnosis and help inform doctors on the best path for treatment. #PatientsHavePower |
| Barby Ingle Official @BarbyIngle A2. Doing it on my own the first time... was overwhelming and I quickly searched out professional help to interpret what I was reading... "Do You Really Want to Know Your Genetic Traits?" - https://t.co/biZRdK4A6E - I wrote this article about the experience... #PatientsHavePower |
| Frank R. @SarcoidosisofLI @Clara_Health Right now since I have been diagnosed from chronic to terminally ill I personally don't have a drawback. What ever they can learn from me is a WIN! I truly believe if I can help one researcher then I won! #PatientsHavePower |
| Marni Cartelli @Purrfectly_Rare A2. #patientsHavePower I guess the curse & blessing of knowledge=both the benefit & drawback Many times we need knowledge to solve a specific problem, but what happens when knowledge leads to more questions or ambiguous answers (what-ifs) Could=more stress |
| Alan Brewington @abrewi3010 A2 the benefit is knowledge is fuel for continuous engagement and motivation for a higher medical literacy rate. #patientshavepower |
| Ken Taylor, RPIC @KenRayTaylor A2: Answers can educate you and offer suggestions on what you can and can not prevent in the future of your own healthcare. It could be out of pocket expense for you. Data privacy could be an issue if a pre existing condition shows in your results. #PatientsHavePower |
| M&B Sciences @mbsciencesinc Q3: Why might someone who doesn’t have a rare disease consider getting a genetic test? #PatientsHavePower https://t.co/RwNwKPlY7N |
 | Heather McCullen @H_SalemOaks Hi #PatientsHavePower, I'm in a meeting for another ten minutes or so. I'll join for the second half |
| Frank R. @SarcoidosisofLI @SavannaBraun You are so right. When you receive the results, you have to be ready for the good but even more the bad. #PatientsHavePower |
| Marni Cartelli @Purrfectly_Rare A3. #patientsHavePower There may be a strong family history of a condition or the person may just be curious They could also do it for research purposes |
| Alan Brewington @abrewi3010 A3 if I am genetically blessed with the potential for Parkinson’s I can start taking better care of myself now. Gain more knowledge now for my future reality #patientshavepower |
| Mary MACK @MaryOCMack T2 T2: the drawbacks to genetic testing are many unfortunately, even if it helps to guide care. Anonymous testing should be an option. It used to be. #PatientsHavePower |
 | Lisa Davis Budzinski @lisadbudzinski RT @BarbyIngle: A2. Doing it on my own the first time... was overwhelming and I quickly searched out professional help to interpret what I was reading... "Do You Really Want to Know Your Genetic Traits?" - https://t.co/biZRdK4A6E - I wrote this article about the experience... #PatientsHavePower |
| Barby Ingle Official @BarbyIngle A3. You dont know if u are a carrier of a genetic condition that could be passed on 2 a child/grandchild, it may not effect u, could save heartache & stress 4 other family. Its a hard choice 2 know, but once you do know... you can make more informed decisions. #patientshavepower |
| Mary MACK @MaryOCMack A3. If I did not have a rare disease, I would not get a genetic test. #PatientsHavePower |
| M&B Sciences @mbsciencesinc A3: If someone's living with a condition but doesn’t feel 100% confident in the diagnosis or feel that their treatment isn’t working, getting a genetic test could help a patient discover they have been misdiagnosed or require a different type of treatment. #PatientsHavePower |
| Ken Taylor, RPIC @KenRayTaylor A3: If you have a family history of disease or symptoms of a condition would be a good reason. If you are having symptoms yourself that arent answered would be a good reason also. Just to satisfy your curiosity could be enough reason. Education! #PatientsHavePower |
 | Lilly Stairs @LillyStairs RT @BarbyIngle: A3. You dont know if u are a carrier of a genetic condition that could be passed on 2 a child/grandchild, it may not effect u, could save heartache & stress 4 other family. Its a hard choice 2 know, but once you do know... you can make more informed decisions. #patientshavepower |
| Frank R. @SarcoidosisofLI @Clara_Health A3-I believe getting the genetic testing the good will truly outweigh the bad. Even if you don't have a rare disease. That is why my daughter and I decided to have tested now. Maybe with knowledge earlier what happened with me won't happen to her. #PatientsHavePower |
| Evan Ehrenberg @EvanEhrenberg A3: While there are plenty of personal reasons for someone to get genetic testing, it’s important to remember that your own results can be informative for your family members as well #PatientsHavePower |
| Evan Ehrenberg @EvanEhrenberg A1: I got @23andMe health genetic testing done. I was somewhat curious about my ancestry, but really wanted to make sure I had as much insight as possible into anything I could predict about my health #PatientsHavePower |
| M&B Sciences @mbsciencesinc Q4: What should patients and caregivers be aware of when considering direct-to-consumer genetic tests vs genetic tests ordered through a doctor? #PatientsHavePower https://t.co/2AvyW7AatN |
| Seth Rotberg @Srotberg15 @SarcoidosisofLI @Clara_Health Interesting point and personally think it depends on the condition. Seeing my mom slowly decline over 17 years and then knowing that can happen to me one day definitely takes an emotional toll on me. #PatientsHavePower |
| Alan Brewington @abrewi3010 A4 Data ownership! Direct to consumer model sells patients data as it were a nuclear hot potato. Patients lose rights. #patientshavepower |
| Marni Cartelli @Purrfectly_Rare A4. #patientsHavePower Data ownership rights! For example even if the data is anonymous, can a private 3rd party sell my genetic info to a lab for a profit for research purposes? I genuinely have no idea I'm asking |
| M&B Sciences @mbsciencesinc A4: DTC tests can be a great resource for those who want to learn more about their health and ancestry, but genetic tests ordered by a doctor are generally the preferred method when screening for a specific diagnosis. #PatientsHavePower |
| Frank R. @SarcoidosisofLI @Srotberg15 @Clara_Health I hear that! It is a slippery slope. For my disease Sarcoidosis it is a disease that can be controlled if caught early. So for me I would want my daughter to know. But Parkinson's is another story. #PatientsHavePower |
| Barby Ingle Official @BarbyIngle A4. It's not all inclusive data... Since I did a saliva test, there were about 2k points of interest that could be run on me. If I had completed a blood test w doc, they could have run over 12k. I settled for 2k in first round of #genetictesting I did. #patientshavepower |
 | Empowering Patients,LLC • Alison @Empoweringpts9 @lisadbudzinski @Clara_Health I wondered about that! I looked at it multiple times and kept thinking it was off...then I was like well maybe I’m way too tired! 😂 I had to change it in my calendar after I saw the graphic. #PatientsHavePower |
| Evan Ehrenberg @EvanEhrenberg A4: Genetic tests ordered by a doctor should come with your doctor or a genetic counselor walking you through your results. While many DTC kits offer that counseling you may have to specially request it. #PatientsHavePower |
| Ken Taylor, RPIC @KenRayTaylor A4: A Dr may be more targeted and have more knowledge in what to look for. As for direct to consumer may be left with more unanswered questions and have to consult with a professional for explanation and education. #PatientsHavePower |
| Empowering Patients,LLC • Alison @Empoweringpts9 @Clara_Health @power4patients @patientsrising @AutonomicRN @iPainFoundation @GilmerHealthLaw I hope it’s a great chat and I can’t wait to read through about others experiences with #genetictesting! I know I took advantage of the free @23andMe database building offer for #IBD patients years ago. Let me help me & science! #PatientsHavePower |
| Evan Ehrenberg @EvanEhrenberg When I received my own results I had some uncertainty with parts of it. Genetic results are often not black and white. I’ve been putting it off but this chat is reminding me to schedule an appointment with a genetic consultant to discuss my results. #PatientsHavePower |
| Frank R. @SarcoidosisofLI @Clara_Health A4- I prefer it being done by a doctor. Your results will be more comprehensive. I am a person who isn't afraid of too much knowledge. I fear the unknown more. #PatientsHavePower |
| Alan Brewington @abrewi3010 A4 direct to consumer model only gives raw data. They can’t diagnose or interpret. This can cause undo stress and anxiety for patients. #patientshavepower |
| M&B Sciences @mbsciencesinc Q5: What resources would you recommend to someone interested in learning more about genetic testing? #PatientsHavePower https://t.co/DKQCGerkz2 |
 | Amy Byer Shainman @BRCAresponder @Clara_Health A4. Hi there, jumping on chat. #PatientsHavePower Some DTC genetic tests are not medical/clinical grade. They must be repeated in clinical setting. So, this essentially doubles your cost, amongst many other things. |
| Alan Brewington @abrewi3010 A5 talk to fellow patients who have undergone testing, regardless of their diagnosis silo. I understand patient stories, hard science not so much. Plus everyone needs a friend. #patientshavepower |
 | Aaron Blocker @AaronBlocker_ Sorry guys! Thought I was gonna make it but couldn’t and had pre-answered questions so just gonna send them now! #patientsHavePower |
| Mary MACK @MaryOCMack Q5 If a genetic test were needed to confirm or rule out a diagnosis, I would say, if at all possible, pay cash. #PatientsHavePower |
| Barby Ingle Official @BarbyIngle A5. To learn more about genetic testing @AmbryGenetics, @ColorGenomics and https://t.co/5pVewivLIV @promethease are the three I have used/using... I would use more than 1 source, also a genetic councilor to help with digesting results #PatientsHavePower |
| Frank R. @SarcoidosisofLI @Clara_Health A5- Talk to others that have done it. Talk with genetic counselors. Be prepared mentally as much as physically. #PatientsHavePower |
| Amy Byer Shainman @BRCAresponder @Clara_Health A4 #PatientsHavePower The most qualified individual to assess which genetic tests, order correct gene panel, & interpret results is > #certifiedgeneticcounselor. #NSGCgenepool @GeneticCouns In best interest of an individual's health to have pre AND post test Crt.Gen.Counseling. |
| Ken Taylor, RPIC @KenRayTaylor A5: I would have to refer to google, https://t.co/cWAGGOr6sl , https://t.co/vNRPhNNb4M , https://t.co/XQ3XKUBahh are some i found on a quick search and seem informative. #patientshavepower |
| Aaron Blocker @AaronBlocker_ A1: I’ve had genetic testing. I was diagnosed with an ultra-rare genetic disease called Hypophosphatasia. #PatientsHavePower |
| Barby Ingle Official @BarbyIngle @SarcoidosisofLI @Clara_Health For real! I didnt see my results coming! shocker mentally and physically! #PatientsHavePower |
| Aaron Blocker @AaronBlocker_ A2: Benefits for genetic testing obviously is to 100% confirm or rule out a suspected genetic disease that can only be diagnosed this way. #PatientsHavePower |
| M&B Sciences @mbsciencesinc Q6: Do you think there is enough awareness about genetic testing? #PatientsHavePower https://t.co/MCXGxPgBwg |
| M&B Sciences @mbsciencesinc A6: With the rise of DTC tests, there is certainly a lot more awareness surrounding genetic testing, but there is always more work to be done, especially when it comes to the role genetic testing plays in receiving a proper diagnosis. #PatientsHavePower |
| Marni Cartelli @Purrfectly_Rare @Srotberg15 I imagine it takes a lot of soul searching 2 decide whether 2 do it I think NE1 can understand Y someone would or wouldn't have it done I think the one thing this past year has taught=our journeys are so personal Every choice made has 2B best 4 that person #patientshavepower |
| Amy Byer Shainman @BRCAresponder #PatientsHavePower A5 RESOURCE @GeneticCouns The National Society of Genetic Counselors Speak to a Certified genetic counselor In person or by phone. https://t.co/Vl5YfMdfDx #NSGCgenepool #GCchat #gencsm |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A1: Yes. To help find answers beyond my longstanding #mito diagnosis. #PatientsHavePower #RareDisease |
| Aaron Blocker @AaronBlocker_ A2:Drawbacks to me comes down to privacy and a long convo with my geneticist about this testing being out there now. #patientsHavePower |
 | Christina Lizaso @btrfly12 RT @BRCAresponder: #PatientsHavePower A5 RESOURCE @GeneticCouns The National Society of Genetic Counselors Speak to a Certified genetic counselor In person or by phone. https://t.co/Vl5YfMdfDx #NSGCgenepool #GCchat #gencsm |
| Christina Lizaso @btrfly12 RT @BRCAresponder: @Clara_Health A4 #PatientsHavePower The most qualified individual to assess which genetic tests, order correct gene panel, & interpret results is > #certifiedgeneticcounselor. #NSGCgenepool @GeneticCouns In best interest of an individual's health to have pre AND post test Crt.Gen.Counseling. |
| Seth Rotberg @Srotberg15 A1 Reach out to your patient advocacy organization to see if they have any resources. Also reach out to @GeneticCouns! #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @SarcoidosisofLI: @Clara_Health A5- Talk to others that have done it. Talk with genetic counselors. Be prepared mentally as much as physically. #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @BRCAresponder: @Clara_Health A4. Hi there, jumping on chat. #PatientsHavePower Some DTC genetic tests are not medical/clinical grade. They must be repeated in clinical setting. So, this essentially doubles your cost, amongst many other things. |
| Amy Byer Shainman @BRCAresponder A6 #PatientsHavePower Many are aware of the term "genetic testing"- it's the lack of awareness that certified genetic counseling is really KEY in the genetic testing equation. Genetic tests are only useful with correct interpretation and when they provide meaning. #NSGCgenepool |
| Heather McCullen @H_SalemOaks Q6: I think it's time to move into creating awareness of what the results mean. People have been given a tool to measure without first having the basics explained. #PatientsHavePower |
| Seth Rotberg @Srotberg15 A1 I think there needs to be more awareness about going through genetic testing with a genetic counselor and the support/resources they can provide someone. @GeneticCouns #PatientsHavePower |
| Aaron Blocker @AaronBlocker_ A3: Some people who don’t have a genetic disease have it done to get their ancestry information. While this is fun to do and know you run the risk of your info being sold off. #PatientsHavePower |
| Alan Brewington @abrewi3010 A6 awareness yes, genetic testing literacy, no. Genetic testing kits are now Christmas presents, the trouble is how we use the data returned and of course what is being done with my data. #patientshavepower |
| Christina Lizaso @btrfly12 RT @BRCAresponder: A6 #PatientsHavePower Many are aware of the term "genetic testing"- it's the lack of awareness that certified genetic counseling is really KEY in the genetic testing equation. Genetic tests are only useful with correct interpretation and when they provide meaning. #NSGCgenepool |
| Ken Taylor, RPIC @KenRayTaylor A6: NO! There needs to be more information to the public in all areas. The information it can supply is priceless for helping people make better decisions with there treatment or health in general. #patientshavepower |
| Barby Ingle Official @BarbyIngle A6. Nope, not yet... #GeneticTesting n itself is still evolving & growing leaps & bounds... The more data collected, the more info to compare with real life data, the more they learn about diseases (especially rare genetic)... long way to go still #PatientsHavePower |
| Aaron Blocker @AaronBlocker_ RT @Clara_Health: A3: A3: If someone's living with a condition but doesn’t feel 100% confident in the diagnosis or feel that their treatment isn’t working, getting a genetic test could help a patient discover they have been misdiagnosed or require a different type of treatment. #PatientsHavePower |
 | #GenCSM @GenC_SM RT @BRCAresponder: A6 #PatientsHavePower Many are aware of the term "genetic testing"- it's the lack of awareness that certified genetic counseling is really KEY in the genetic testing equation. Genetic tests are only useful with correct interpretation and when they provide meaning. #NSGCgenepool |
| #GenCSM @GenC_SM RT @BRCAresponder: #PatientsHavePower A5 RESOURCE @GeneticCouns The National Society of Genetic Counselors Speak to a Certified genetic counselor In person or by phone. https://t.co/Vl5YfMdfDx #NSGCgenepool #GCchat #gencsm |
| Aaron Blocker @AaronBlocker_ A4: Direct to consumer you run the risk of your data being sold out. Like the recent news story where genetic info sold to a pharma company. From your physician you don’t really run as much of a risk and be confident your dr is keeping your privacy. #PatientsHavePower |
| Aaron Blocker @AaronBlocker_ RT @Clara_Health: A4: A4: DTC tests can be a great resource for those who want to learn more about their health and ancestry, but genetic tests ordered by a doctor are generally the preferred method when screening for a specific diagnosis. #PatientsHavePower |
| Marni Cartelli @Purrfectly_Rare A6. #patientsHavePower NO! 2B honest I still don't understand it & its applications fully. I have no idea whats available or how 2 access it fully. I want 2 learn more but even finding the proper educational resources at a level beyond basic but below academic is difficult |
| Mary MACK @MaryOCMack Q6. I think there is awareness about genetic testing, especially in folks that have a condition and a family history of that condition. USA’s for profit system, insurance companies etc make it hard to choose genetic testing as a routine element of care. #PatientsHavePower |
| Frank R. @SarcoidosisofLI @Clara_Health No. It is truly getting much better, but we still have a ways to go. As a Patient Ambassador for @illumina they started this program so we can tell our stories and help them understand what and how much genetic testing could truly affect and possibly save life #PatientsHavePower |
 | USP7 @FoundationUSP7 RT @Srotberg15: A1 At the age of 20 I went through genetic testing because I was tired of living with the unknown. I have many friends who have also tested and always tell people it’s a personal decision and an extremely difficult one to make. #PatientsHavePower |
| Frank R. @SarcoidosisofLI RT @Purrfectly_Rare: A6. #patientsHavePower NO! 2B honest I still don't understand it & its applications fully. I have no idea whats available or how 2 access it fully. I want 2 learn more but even finding the proper educational resources at a level beyond basic but below academic is difficult |
| M&B Sciences @mbsciencesinc Thank you to everyone for joining and sharing your stories/resources. Together, we can help raise awareness and spread education about genetic testing so that all individuals are empowered to make more informed healthcare decisions! #PatientsHavePower |
| Aaron Blocker @AaronBlocker_ A5: National Organization for Rare Diseases (NORD) has some really good resources for genetic testing. Also organizations for my own genetic disease have great info. #PatientsHavePower |
| Aaron Blocker @AaronBlocker_ A6: I don’t think there is enough awareness but I think we are reaching a turning point given there’s been a huge spotlight on direct to consumer testing. #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @AaronBlocker_: A5: A5: National Organization for Rare Diseases (NORD) has some really good resources for genetic testing. Also organizations for my own genetic disease have great info. #PatientsHavePower |
| Barby Ingle Official @BarbyIngle Top Influencers of #PatientsHavePower 2/7/2019 chat 👉 @BarbyIngle @btrfly12 @abrewi3010 @AaronBlocker_ @Srotberg15 @BRCAresponder @Clara_Health @KenRayTaylor @SarcoidosisofLI @SavannaBraun - https://t.co/uJU9AgARr8 via @symplur |
| Amy Byer Shainman @BRCAresponder @Clara_Health A4. #PatientsHavePower Patients need to understand the importance of certified genetic counselors. Most DTC do not provide this option. Some do. Most doctors are not trained in genetics. This is a problem for both. |
| Amy Byer Shainman @BRCAresponder RT @Srotberg15: A1 Reach out to your patient advocacy organization to see if they have any resources. Also reach out to @GeneticCouns! #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @BRCAresponder: @Clara_Health A4. #PatientsHavePower Patients need to understand the importance of certified genetic counselors. Most DTC do not provide this option. Some do. Most doctors are not trained in genetics. This is a problem for both. |
| Amy Byer Shainman @BRCAresponder RT @AaronBlocker_: A5: A5: National Organization for Rare Diseases (NORD) has some really good resources for genetic testing. Also organizations for my own genetic disease have great info. #PatientsHavePower |
| Frank R. @SarcoidosisofLI @Clara_Health Thank you for having these chats. This is a great resource and a great way to get the word out so others can understand what we say. Thank you to all of you! #PatientsHavePower |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz @Clara_Health A2: The results, interpretation, and reaction are very individual. It could mean admission to #clinicaltrials, confirmation of what was strongly suspected, or in some cases, a complete and total surprise. The nature of the surprise could be good or bad. #PatientsHavePower |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz RT @Clara_Health: A3: A3: If someone's living with a condition but doesn’t feel 100% confident in the diagnosis or feel that their treatment isn’t working, getting a genetic test could help a patient discover they have been misdiagnosed or require a different type of treatment. #PatientsHavePower |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz RT @Clara_Health: A4: A4: DTC tests can be a great resource for those who want to learn more about their health and ancestry, but genetic tests ordered by a doctor are generally the preferred method when screening for a specific diagnosis. #PatientsHavePower |
| Amy Byer Shainman @BRCAresponder @Clara_Health A4 Yes, #PatientsHavePower #resources Learn more about the importance of certified genetic counselors: https://t.co/SYokUxvKLv a piece from 2015 in @OncNursingNews @OncKelly https://t.co/wiqw8eMpKl & @MyGeneCounsel is an excellent resource. #NSGCgenepool |
| Amy Byer Shainman @BRCAresponder RT @Clara_Health: Q4: Q4: What should patients and caregivers be aware of when considering direct-to-consumer genetic tests vs genetic tests ordered through a doctor? #PatientsHavePower https://t.co/2AvyW7AatN |
| Amy Byer Shainman @BRCAresponder RT @btrfly12: Genetic Testing #PatientsHavePower Twitter Chat - Thur Feb 7th 3pmET https://t.co/eMKXjxPEYy #gencsm #gcchat #nsgcgenepool |
| Frank R. @SarcoidosisofLI @Clara_Health It truly is my honor to be part of this great organization. I truly believe that we can do so much with the collaboration of groups! You guys have helped me out immensely. Thank you again! #PatientsHavePower |
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