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
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) .
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/
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 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/
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/
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 ;-)
@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/
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
Smart Patients For more details on how we operate, see http://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 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.
@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.
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"
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