We held the 2nd #GYNcsm Digital Health Fair during our May chat time slot. We had 63 participants, 638 tweets and 3.5 million impressions. You may read the transcript here and more analytics here.
We began our chat with two questions:
T1: What kinds of information and support do you, your loved one, or those you support find to be most needed during diagnosis, treatment, and on-going? #gyncsm
Responses included:
- I think the kind/type of information and support needed is not one size fits all and can also change along the way, but I always found hearing other patients' stories to be helpful
- At first I see a big need to not feel alone. Also a competing desire to learn all you can but also not wanting to overwhelm yourself.
- Treatment options & talking to Patients who are going through the same thing as you are. HOPE
- I find that uterine cancer patients and survivors require lots of information because the majority of those that reach out to us have received very little information specific to uterine/endometrial cancer. mental and emotional support
- Mental, Emotional, Physical, and Financial
- It is very important for a gyn cancer patient to be treated by a gynecologic oncologist. Patients can look up gyn cancer practitioners in their area through the https://t.co/B5n3t5cnZW Seek a Specialist link https://t.co/ZqwGXLFwA7
T2: For peer and emotional support, do you attend in-person groups, online groups, one-on-one? Why or why not? #gyncsm
Responses included:
- I attend and we offer virtual online support groups. They are easier to find and safer. We plan on starting in-person support as soon as we get more participation
- I attend mostly virtual groups however the SISTER Study recently held a Summit in Seattle and I had the pleasure of meeting 12 of my closest friends IRL for the first time. All of us, Black endometrial cancer survivors!!
- For me the support began at my doctors office. Then online to “meet” people with my condition. Lasting friendships made & now private calls.
- I think it is important to find a group you really connect with. It might be an all-cancer group or other kinds of grouping than your exact cancer. And you could do a peer 1-1 but also be in a different organized group like by age.
- NOCC’s Teal Hearts Network, a regional peer-to-peer online support group, allows you to connect with other #ovariancancer survivors for the emotional support needed to navigate this journey. https://t.co/GhHEU8c3Sg
- There is an emotional connection you can make with others going through the same things you are that can happen much easier at small in-person gatherings
Then we moved on to the Digital Health Fair portion of the chat. We asked each organization, in alphabetical order by Twitter handle, to tell us about their mission, programs and awareness message. Since we had a large number of organizations participating we will list each organization by handle with a few tweets about their mission or program (Complete transcript) .
@advovarianca_hu
Our mission is to provide those impacted by ovarian cancer with a space to find information, share experiences, and connect with others who understand. You can find us on our website, https://advancedovariancancer.net/ on Instagram, @advancedovariancancer, on Twitter, @advovarianca_hu, and on Facebook at AdvancedOvarianCancerHU. We offer first-hand articles written by our patient leaders living with ovarian cancer, stories shared by community members, and opportunities to connect with others in our forums.
Our mission is to provide those impacted by ovarian cancer with a space to find information, share experiences, and connect with others who understand. You can find us on our website, https://advancedovariancancer.net/ on Instagram, @advancedovariancancer, on Twitter, @advovarianca_hu, and on Facebook at AdvancedOvarianCancerHU. We offer first-hand articles written by our patient leaders living with ovarian cancer, stories shared by community members, and opportunities to connect with others in our forums.
@Alive_And_Kickn
AliveAndKickn’s mission is to improve the lives of individuals and families impacted by Lynch syndrome and associated cancers through research, education and screening. In partnership with @ColonCancerCoal, we will be hosting the 2022 Living with Lynch Patient Workshop in Boston Sept 15-18th. You can apply to be considered here, https://www.livingwithlynch.org/ . AliveAndKickn also hosts a virtual patient community discussion series. Various topics related to Lynch syndrome are discussed each month, check out the schedule, topics and registration here, https://www.aliveandkickn.org/2022-patinet-community-discussions Women with Lynch syndrome hereditary cancer gene mutations are at high risk for several different gyn cancers. Learn more https://www.aliveandkickn.org/
AliveAndKickn’s mission is to improve the lives of individuals and families impacted by Lynch syndrome and associated cancers through research, education and screening. In partnership with @ColonCancerCoal, we will be hosting the 2022 Living with Lynch Patient Workshop in Boston Sept 15-18th. You can apply to be considered here, https://www.livingwithlynch.org/ . AliveAndKickn also hosts a virtual patient community discussion series. Various topics related to Lynch syndrome are discussed each month, check out the schedule, topics and registration here, https://www.aliveandkickn.org/2022-patinet-community-discussions Women with Lynch syndrome hereditary cancer gene mutations are at high risk for several different gyn cancers. Learn more https://www.aliveandkickn.org/
@CancerAdvocacy
NCCS - National Coalition for Cancer Survivorship represents millions of Americans who share
the survivorship experience of living with, through, and beyond a cancer
diagnosis. We advocate for policy changes that ensure quality cancer
care for all. Our work reflects the needs of survivors at the national
level. NCCS’s Cancer Policy & Advocacy Team is a
program for survivors and caregivers to advocate for policies that
address cancer survivors' needs. Learn more and complete the
questionnaire to become a part of our nationwide network of advocates. https://canceradvocacy.org/get-involved/cpat/ NCCS's Survivorship Champions program is an
opportunity for clinicians and researchers to exchange information about
best practices, lessons learned, and effective models of cancer
survivorship care. https://canceradvocacy.org/get-involved/survivorship-champions/
@CancerAndCareer
Cancer and Careers empowers & educates people with any kind of cancer to thrive in any kind of job, by providing expert advice, interactive tools & educational events. All of our programming is offered 100% free of charge to patients and survivors. We offer 3 conferences a year. Registration is open for our next one on Fri, 6/24 ( https://www.cancerandcareers.org/en/community/events/conference ) Other programs include: Monthly webinars https://www.cancerandcareers.org/en/community/events/webinars Resume review https://www.cancerandcareers.org/resume_reviews/new & websites in English https://www.cancerandcareers.org/en & Spanish https://www.cancerandcareers.org/es where you can order materials, ask Qs to experts & more. You can reach out to us by email (cancerandcareers@cew.org) or by phone (646-929-8032).
Cancer and Careers empowers & educates people with any kind of cancer to thrive in any kind of job, by providing expert advice, interactive tools & educational events. All of our programming is offered 100% free of charge to patients and survivors. We offer 3 conferences a year. Registration is open for our next one on Fri, 6/24 ( https://www.cancerandcareers.org/en/community/events/conference ) Other programs include: Monthly webinars https://www.cancerandcareers.org/en/community/events/webinars Resume review https://www.cancerandcareers.org/resume_reviews/new & websites in English https://www.cancerandcareers.org/en & Spanish https://www.cancerandcareers.org/es where you can order materials, ask Qs to experts & more. You can reach out to us by email (cancerandcareers@cew.org) or by phone (646-929-8032).
Our site provides information and resources for people with cancer and their caregivers, that is easy to understand and comprehensive. We strive to educate, support, and help people
with cancer and their loved ones with trusted, expert-reviewed
information and resources.
We're marking #20years of providing #CancerEducation as @ASCO's #PatientEducation resource.
A #Survivorship
Care Plan (SCP) is a way to keep a record of your cancer treatments
& recommended follow-up care to support your future health.
@ASCO offers a series of SCP forms, incld new additions on cervical, uterine, & ovarian cancers https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans https://www.cancer.net/
@CancerHopeNet
For more than 40 years, we’ve been providing hope and #peersupport for cancer patients and the people who love them. Our free and confidential matches are available at any point in a #cancer journey – from #genetictesting, through dx, treatment, survivorship, bereavement . Each of our matches (connection between volunteer mentor and client) are supervised by our Programs Team - healthcare/social work professionals – who provide additional resources and information for patients and caregivers. Find us online – https://cancerhopenetwork.org/ - or by calling 877-HOPENET (877.467.3638). Talk with a member of our Programs Team to find a survivor or caregiver mentor who’s a perfect fit. #gyncsm https://t.co/kdiXD5GCfl
For more than 40 years, we’ve been providing hope and #peersupport for cancer patients and the people who love them. Our free and confidential matches are available at any point in a #cancer journey – from #genetictesting, through dx, treatment, survivorship, bereavement . Each of our matches (connection between volunteer mentor and client) are supervised by our Programs Team - healthcare/social work professionals – who provide additional resources and information for patients and caregivers. Find us online – https://cancerhopenetwork.org/ - or by calling 877-HOPENET (877.467.3638). Talk with a member of our Programs Team to find a survivor or caregiver mentor who’s a perfect fit. #gyncsm https://t.co/kdiXD5GCfl
ECANA is a black EC survivor-led infrastructure
for personal empowerment to better health - through knowledge, community
building, and action - for African-American women at risk and those
already affected by endometrial cancer. ECANA promotes transparent, patient-centered
research to reduce racial disparities in endometrial cancer through
project development and public promotion of research efforts to that
effect. The S.I.S.T.E.R Study is one example of those projects.
https://www.pcori.org/research-results/2020/comparing-three-ways-offer-social-support-black-women-during-treatment-endometrial-cancer "Survivors Sanctuary" is a mindful movement
program that runs every two weeks and features chair yoga and
conversation for black women at any stage of their cancer journey.
Register at https://ecanawomen.org/ and sign up for our quarterly newsletter to stay informed of happenings. CEP's-EC (Community Empowerment
Partners-Endometrial Cancer) is a flagship program for ECANA that was
adapted from Cierra Sisters' original community empowerment program that
educates black communities about specific disease states.
An organization dedicated to improving the comfort & care of cancer patients & caregivers. The Elixir Fund Registry is a free, easy to use
tool that allows patients and caregivers to create a list of their needs
with links to e-gift cards for things like grocery gift cards, meal
delivery, gas gift cards, massage and more. The Registry can be shared with family and friends or made public for the larger community to help. https://www.elixirfund.org/registry/ https://www.elixirfund.org/
@IamCervivor
#Cervivor is a global community of patient advocates who inspire and empower those affected by #cervicalcancer by educating and motivating them to use their voices for creating awareness to #endSTIgma, influence decision and change, and #endcervicalcancer. You can find out more by going to our website at https://cervivor.org/ or visit https://linktr.ee/Cervivor to connect with us across our social media platforms, podcast, award-winning YouTube channel, and to sign-up for our newsletter. #Cervivor has a premiere event called #CervivorSchool for patient advocacy training. We also have a private Facebook group and a monthly support group for #cervicalcancer patients/survivors. And we have a fitness community for all cancer survivors. Another program we offer is our Comfort Care & Compassion Program for newly diagnosed or for those facing a metastatic recurrence of #CervicalCancer. The CCC Program was designed by survivors to close the support gap: https://docs.google.com/forms/d/e/1FAIpQLSdqnQ4tTudLWj6yN-Y-3uPJ5Gua9MYsOYRFuWdm1akBIWbvlg/viewform
#Cervivor is a global community of patient advocates who inspire and empower those affected by #cervicalcancer by educating and motivating them to use their voices for creating awareness to #endSTIgma, influence decision and change, and #endcervicalcancer. You can find out more by going to our website at https://cervivor.org/ or visit https://linktr.ee/Cervivor to connect with us across our social media platforms, podcast, award-winning YouTube channel, and to sign-up for our newsletter. #Cervivor has a premiere event called #CervivorSchool for patient advocacy training. We also have a private Facebook group and a monthly support group for #cervicalcancer patients/survivors. And we have a fitness community for all cancer survivors. Another program we offer is our Comfort Care & Compassion Program for newly diagnosed or for those facing a metastatic recurrence of #CervicalCancer. The CCC Program was designed by survivors to close the support gap: https://docs.google.com/forms/d/e/1FAIpQLSdqnQ4tTudLWj6yN-Y-3uPJ5Gua9MYsOYRFuWdm1akBIWbvlg/viewform
@NOCC_National
Our #mission is to save lives through the prevention and cure of #ovariancancer and to improve quality of life for survivors and their caregivers. https://ovarian.org/ There is no screening test for #ovariancancer; a Pap test cannot detect the disease. So, women need to know their bodies, be aware of the signs and take early action. Our #peersupportprograms offer ways to connect with other survivors and caregivers who can provide unique perspectives on your #ovariancancer journey: https://ovarian.org/find-support/resources-support/ . Our #onlineprograms offer education on #ovariancancer and quality of life issues. From #virtual education to our monthly #FacebookLive series Ask the Experts, we deliver timely and relevant education. Our #directsupport services aim to reduce barriers associated with #ovariancancer care, such as #financialassistance, meal delivery, and mental health services. All of these are available at no cost: https://ovarian.org/find-support/resources-self-care/ Ready to learn more and join our TEAL community? Sign up for our newsletter today! We are here to connect - got questions? Ask away! https://nocc.ovarian.org/emailsignup
Our #mission is to save lives through the prevention and cure of #ovariancancer and to improve quality of life for survivors and their caregivers. https://ovarian.org/ There is no screening test for #ovariancancer; a Pap test cannot detect the disease. So, women need to know their bodies, be aware of the signs and take early action. Our #peersupportprograms offer ways to connect with other survivors and caregivers who can provide unique perspectives on your #ovariancancer journey: https://ovarian.org/find-support/resources-support/ . Our #onlineprograms offer education on #ovariancancer and quality of life issues. From #virtual education to our monthly #FacebookLive series Ask the Experts, we deliver timely and relevant education. Our #directsupport services aim to reduce barriers associated with #ovariancancer care, such as #financialassistance, meal delivery, and mental health services. All of these are available at no cost: https://ovarian.org/find-support/resources-self-care/ Ready to learn more and join our TEAL community? Sign up for our newsletter today! We are here to connect - got questions? Ask away! https://nocc.ovarian.org/emailsignup
Ovarian Cancer Research Alliance (OCRA) is the
largest non-government funder of ovarian cancer research and has
invested $110 million in research since its founding. OCRA fights ovarian cancer from all fronts,
including in the lab and on Capitol Hill, and through innovative
programs to support patients and their families. Visit us at https://ocrahope.org/ & follow us on social: @ocrahope OCRA offers support for all gynecologic cancer patients & their loved ones! Visit https://ocrahope.org/patients/resources/ to get more info about our patient support line, Woman to Woman peer
mentor program, Staying Connected online support groups & @teaminspire global online community. Join us in making a difference! Our Survivors
Teaching Students volunteers educate rising healthcare professionals.
Our team of Advocate Leaders engage with elected officials about
critical issues. Learn about ways to get involved: https://ocrahope.org/get-involved/
To raise global awareness, to fund research, and
to provide financial, psycho-social & informational support to
Ovarcomers. Learn about our #OvarCare financial, psycho-social and informational assistance program, now operational in partnership with ~250 hospitals nationwide! Join us for our #TealTruths ONLINE Group Counseling sessions each month, https://ovarcome.org/teal-truths/ Stay updated with the latest & greatest advances in #OvarianCancer and learn from the Global Experts! Let's #ConnectOvarCoffee every 2 weeks! WATCH all videos aired to date ON DEMAND here: https://ovarcome.org/connect-ovar-coffee/ https://t.co/e0pnXyy0Kv Ask The Expert DIRECTLY Online!
Learn about this program here: https://ovarcome.org/oc-360-live/ #OC360LIVE!
The World Ovarian Cancer Coalition was founded in
2016 and is a global network of close to 200 patient advocacy orgs with
a vision of a world where every woman with ovarian cancer has the best
chance of survival, and the best quality of life – wherever she may
live. Our year-round work focuses on 3 pillars - awareness raising (like #WOCD2022), development of original data/research to empower the #ovariancancer community and supporting our partner organizations to help them do their important work in their countries. We are currently working on the The Every Woman Study™️: Low- and Middle-Income Edition with @IGCSSociety to capture experiences of those with #ovariancancer in up to 30 LMIC, where 70% of those diagnosed live yet where they have limited/no access to care. If the #ovariancancer community could only do one thing, especially just after #WOCD2022, it would be to share with everyone they know the 5 Facts of Ovarian Cancer.#gyncsm https://t.co/1tT1UvMDFG We have these 5 Facts in 22 different languages here: https://drive.google.com/drive/folders/1Ewf8hL3N0Ru3OPOQAqu2PbixC9VGQMYK If you see a language missing that you can help us with, please DM us
as we would love to offer even more. 2nd thing you can do is support
your local patient org ;-)
@power4patients
PEN's mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence and put them in control of their care so they best, most personalized care available. To help improve #healthliteracy, we created digital sherpa™ and Digitally Empowered™ because we believe all patients, regardless of age and technical ability, should have access to health information about their care. Learn more: https://powerfulpatients.org/digitally-empowered-and-digital-sherpa/ . Our Clinical Trials 101 program aims to debunk misconceptions and fears about trial participation and provides patients with knowledge and confidence to feel well-informed when discussing treatment options with their healthcare team. Learn more: https://powerfulpatients.org/help-by-cancer-diagnosis/generalhealthinfo/clinical-trials-101/
PEN's mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence and put them in control of their care so they best, most personalized care available. To help improve #healthliteracy, we created digital sherpa™ and Digitally Empowered™ because we believe all patients, regardless of age and technical ability, should have access to health information about their care. Learn more: https://powerfulpatients.org/digitally-empowered-and-digital-sherpa/ . Our Clinical Trials 101 program aims to debunk misconceptions and fears about trial participation and provides patients with knowledge and confidence to feel well-informed when discussing treatment options with their healthcare team. Learn more: https://powerfulpatients.org/help-by-cancer-diagnosis/generalhealthinfo/clinical-trials-101/
@SGO_org
The Foundation for Women’s Cancer @GYNCancer is the official foundation of the Society of Gynecologic Oncology. FWC’s #MoveTheMessage campaign seeks to increase awareness and drive early diagnosis of the 5 gyn cancers. https://www.foundationforwomenscancer.org/movethemessage/ @GYNCancer recently released 7 updated brochures about the 5 gyn cancers, CA125 and clinical trials https://t.co/p9FdPBueQx FWC is currently translating some materials into Spanish and Mandarin Chinese. Brand new fact sheets on rare tumors in #gyncancer are also available on the @GYNCancer website. https://www.foundationforwomenscancer.org/gynecologic-cancers/educational-materials/
The Foundation for Women’s Cancer @GYNCancer is the official foundation of the Society of Gynecologic Oncology. FWC’s #MoveTheMessage campaign seeks to increase awareness and drive early diagnosis of the 5 gyn cancers. https://www.foundationforwomenscancer.org/movethemessage/ @GYNCancer recently released 7 updated brochures about the 5 gyn cancers, CA125 and clinical trials https://t.co/p9FdPBueQx FWC is currently translating some materials into Spanish and Mandarin Chinese. Brand new fact sheets on rare tumors in #gyncancer are also available on the @GYNCancer website. https://www.foundationforwomenscancer.org/gynecologic-cancers/educational-materials/
@SHAREing
SHARE is a national nonprofit that supports, educates, and empowers anyone who has been diagnosed with women’s cancers. Learn more and connect with our community of knowledgeable survivors, women living with cancer, and healthcare professionals at https://t.co/u78nMdGerT All of our Support Groups and Educational Programs are online and free! We offer programs and support for those with ovarian, uterine, and cervical cancer. #GYNCSM https://t.co/Lm3cH0y81J
SHARE is a national nonprofit that supports, educates, and empowers anyone who has been diagnosed with women’s cancers. Learn more and connect with our community of knowledgeable survivors, women living with cancer, and healthcare professionals at https://t.co/u78nMdGerT All of our Support Groups and Educational Programs are online and free! We offer programs and support for those with ovarian, uterine, and cervical cancer. #GYNCSM https://t.co/Lm3cH0y81J
We are the Mucinous Ovarian Cancer Coalition.
Launched by my late sister in September of 2020. In addition to
financial supportnd opinions, and resources, we fund research grants.
RFPs for Rhonda’s Award begins on June 2nd for grants up to $50k. https://t.co/tFgEAIE4kv
Smart Patients is like a caring family. Women
share posts with other patients who understand their cancer, providing
guidance, emotional support, news of research, and available trials. For more details on how we operate, see Smartpatients.com/faq. We're proud of the communities our members have built and of their dedication to sharing support and accurate information. Medical experts often tell us they had no idea patients knew so much!
Stupid Cancer is a 501(c)3 nonprofit
organization whose mission is to help empower everyone affected by AYA
cancer by ending isolation and building community. Check our website is https://t.co/M4pF8JcERN We at Stupid Cancer host a range of interactive
and educational programs on topics important to the AYA cancer
community. We host monthly discussions series led by experts on topics
important to the young adult cancer community where you get to unpack
your experiences. We also host casual, and social events known as
digital meetups which give a chance for AYA peers to connect and party
with others in the community. And we also host quarterly open mic
nights for the community to share their stories with their peers. Registration is still open for #CancerCon
Live 2022 in Minneapolis this June! This conference brings together
hundreds of patients, survivors, caregivers, advocates and health
professionals to learn, share and build community. For more info visit https://t.co/imbFdtZRDt. To stay up-to-date with the Stupid Cancer community and events, follow us on social media @stupidcancer. Also visit https://t.co/M4pF8JcERN to check out our events calendar.
@SuzieSiegel
@SarcomaAlliance has FB pages for support & news, an annual conference & tons of info. The problem for women with gyn #sarcoma is that gyn nonprofits may have little or nothing on sarcoma. It can be confusing to patients who only understand that they have cancer. Sarcomas should be treated by centers of excellence with a multidisciplinary team specializing in #Sarcoma. These tumors are too rare and too aggressive to not seek the BEST care.@reininsarcoma @CareSarcoma #Rhabdomyosarcoma (@pgargollo) @SarcomaAlliance has FB pages for support & news, an annual conference & tons of info. The problem for women with gyn #sarcoma is that gyn nonprofits may have little or nothing on sarcoma. It can be confusing to patients who only understand that they have cancer.
@SarcomaAlliance has FB pages for support & news, an annual conference & tons of info. The problem for women with gyn #sarcoma is that gyn nonprofits may have little or nothing on sarcoma. It can be confusing to patients who only understand that they have cancer. Sarcomas should be treated by centers of excellence with a multidisciplinary team specializing in #Sarcoma. These tumors are too rare and too aggressive to not seek the BEST care.@reininsarcoma @CareSarcoma #Rhabdomyosarcoma (@pgargollo) @SarcomaAlliance has FB pages for support & news, an annual conference & tons of info. The problem for women with gyn #sarcoma is that gyn nonprofits may have little or nothing on sarcoma. It can be confusing to patients who only understand that they have cancer.
@ucan2020
Uterine Cancer Awareness Network is an IRS-approved 501c3 dedicated to raising public awareness regarding uterine/endometrial cancer with a strong focus on underserved communities. UCAN is dedicated to helping patients, survivors, and caregivers find support and patient services specific to endometrial cancer. If we don’t offer what’s needed, we will search our network to help find it and take some of the burdens off you! We currently provide monthly virtual support groups, free chemo caps, UCAN treatment bags, Hydration products, and free awareness seminars hosted by our founder who's a survivor diagnosed at 27. Our Peach Sister Program is a program we offer that will match you with a sister that will grab your hand and walk this walk with you! #gyncsm https://t.co/UQNK8tmDdI You can reach UCAN at uterinecancerawarenessnetwork@outlook.com or on our website at https://t.co/f0PozYTSWL we are also on FB!
Uterine Cancer Awareness Network is an IRS-approved 501c3 dedicated to raising public awareness regarding uterine/endometrial cancer with a strong focus on underserved communities. UCAN is dedicated to helping patients, survivors, and caregivers find support and patient services specific to endometrial cancer. If we don’t offer what’s needed, we will search our network to help find it and take some of the burdens off you! We currently provide monthly virtual support groups, free chemo caps, UCAN treatment bags, Hydration products, and free awareness seminars hosted by our founder who's a survivor diagnosed at 27. Our Peach Sister Program is a program we offer that will match you with a sister that will grab your hand and walk this walk with you! #gyncsm https://t.co/UQNK8tmDdI You can reach UCAN at uterinecancerawarenessnetwork@outlook.com or on our website at https://t.co/f0PozYTSWL we are also on FB!
Thank you to all the organizations who joined us.
See you on Wednesday June 8, 2022 at 8pm ET for our Chat on "Gyn Cancer Research News"
Dee
