Wednesday, August 10, 2022

August 10, 2022 Advocacy for Yourself and Others

The #gyncsm community welcomed twenty-two participants as we discussed Advocating for Yourself and Others.  You may find the transcript here and analytics here. For resources, please see responses to Topic Question 5 . 

Before we started the chat, we took a moment to remember a very special advocate Dicey Scroggins. She advised and inspired so many of us and helped raise patient advocacy to a new level, especially for Black women. She will be missed. #RestinPeace #RememberingDicey

T1: What are some of the different types of healthcare advocacy?
  • 1: Healthcare advocacy can involve the full care team or individuals like social workers and nurse navigators. They can help with access to care, make informed healthcare decisions, and all of the insurance tasks that come with treatment.
  • Patient advocates can build partnerships with their care team (like @pattiny1) to provide screen and treat events. They can also provide resources about support groups like our Creating Connections to meet others in real-time. No one should ever feel alone.
  • Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up
  • My list includes Advocating for yourself , advocating for increasing funding of research, legislative and policy advocacy, advocating for patient engagement in clinical trial access,
  • T1: Being aware of the community being served which means considering any language or cultural considerations. Also, providing a engaging framework that reaches out to those most vulnerable.
  • So many things to work on in this space. Patient advocacy, Research advocacy, Community advocacy, Policy advocacy and across all sorts of areas - screening, diagnosis, clinical care, survivorship, end-of-life care. Whatever you are driven by, there is room for you here
  • One can choose to advocate for anything that is important to them or to their families. And if advocacy work doesn’t exist in a certain space, create it! Who will tell you no, especially if it’s needed?
T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare?
T2b: What prompted you to "put on your advocacy hat"?
  • We share resources to help patients become more educated on their options, we share our personal stories to help create decisions and changes in policy, and we partner with community leaders to make a difference in our local communities.
  • Dee and I have participated in @SaludAmerica @patientchat and other tweet chats to spread education about gynecologic cancers. We also participate in awareness days/month activities online - like #Dazzle4Rare that is happening this week.
  • At an individual patient level collecting these resources that are available and sharing them with our patients is very important to have on hand! This can be an important link for patients To have both print or online depending on what patients want!
  • T2b: I was 24 and faced a lot of challenges throughout treatment. The only other person I knew who experienced #CervicalCancer passed away at 27. I didn't know about Cervivor. I had a support system but did not know anyone with my cancer. I wanted to change that
  • After request from PCP met with his residents to talk about the effects of Cancer/treatment from a patient perspective
  • 2b: How could anyone know a patient with gynecologic cancer and not love them and advocate for them?
  • T2 I became interested in advocacy after I was dx w/endometrial cancer
  • The system didn't have the answers I needed so I set out to find them. For myself & others. Along the way, I identified more gaps/challenges but also tons of motivated people who all are looking to change the narrative in cancer. So I've stayed. T2b
  • I run a FB group, serve as a consumer reviewer with the DOD, and, as a freelance healthcare journalist, write about gyn cancer
  • Wanting to make a difference beyond myself. My Nana had the same diag/prognosis, basically. Know science/time alone aren't enough. We have to push / demand / work so standard of care isn't standard of fail for so many.
T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system?
  • T3: From a provider's point of view: having great listening skills and empathy can go a long way. As a patient advocate: knowledge is power, your personal story has an impact, and persistence is key.
  • Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it"
  • Advocacy for yourself or a loved one can mean lots of record keeping - if that's not a skill you have, maybe you can find someone that loves to organize and it is a great way they can feel helpful
  • I think the most important resources for healthcare advocacy are (ironically) hope, faith, and love, and the most important is hope. Hoping that something/anything will make a difference for good
  • T3 You have to look past the fear of the unknown and the fear of rejection. Advocacy work can sometimes be “thankless” if it feels as if you aren’t accomplishing something important. So focus on YOUR ‘why’ & don’t waver.
T4: What are some of the barriers you have experienced in advocating for yourself and/or others? Any tips to pass along?
  • Our community faces: systemic racism, access to care, misdiagnosis, ageism, financial toxicity, lack of medical coverage, and food scarcity. Find your social workers and nurse navigators (if available) or reach out to The Patient Advocate Foundation or @familyreach
  • Those in healthcare are not always used to informed, empowered patients. Getting better maybe? Showing up with an open mind and trying to understand the "other side" can help. But also be alert for those just wanting free labor / just "using" your story
  • For myself: Old school paternalism and protocol-based care. For others: Access to affordable, quality treatment options. For communities: oh man... #healthquity is one of the biggest challenges in all of healthcare, not just cancer.
  • T4 Patient advocates want to be involved but many do not have the $ to attend meetings or participate in presentations/panels. Support from Pharma and the oncology organizations could help. It has improved some but not in all cases.
  • For myself: Being a parent & while diagnosed - a single one who had to work for insurance. Better medical options didn't always mesh with needing to work, drive, parent. For others: time/energy is limited & breaking through & finding ways to use skills meaningfully.
T5: What are some of the organizations, programs and resources that have helped you become a more confident advocate and/or provide opportunities for you to advocate? Feel free to share their twitter handle and/or website.
T6: Are there things that groups focusing on advocating for gyn cancer patients, those with and at-risk for hereditary cancer, and cancer in general could provide to better support you when it comes to advocacy? What issues in the gyn cancer community do we need to draw attention to?
  • Non-uniformity of care is a big issue. The care people get for the same disease or condition varies widely. If you don't have an idea of the treatments people get in different places, you don't know what's missing for you and what you can advocate for.
  • Cancer Centers / community health centers should be including patient advocates at all levels - patient experience, patient support, SRB, IRB , center priorities etc. 
  • Support orgs like all of us, by sharing our stories, supporting our programming, engaging in our social media content, including the patient voice in research, advisory boards, etc. Creating inclusive and culturally competent policies, clinical trials, & resources
  • Quick guides to different types of advocacy @TriageCancer https://triagecancer.org/cancer-advocacy
 
We are so happy so many advocates could join us and share their experience and support one another. 

#gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28.Further information may be found at https://igcs.org/advocacy/advocacy-summit/

Gynecologic Cancers Social Media is participating #Dazzle4Rare all week. Learn about some of the rare gynecologic cancers on our blog at https://gyncsm.blogspot.com/2020/09/september-9-2020-rare-ovarian-and-rare.html and follow the #GYNCSM hashtag to learn about other rare diseases.

Save the date for our next #gyncsm chat on Wednesday, September 14th at 8pmET.  We’ll discuss Clinical Trials. September is also Gynecologic Cancer Awareness Month. 

We hope to see you then.
 

Dee and Christina


Friday, August 5, 2022

Advocacy for Yourself and Others - Aug 10, 2022

advocacy  noun : the act or process of supporting a cause or proposal the act or process of advocating something

From the Merriam-Webster dictionary
 

On Wednesday August 10, 2022 at 8pm ET ( 7pm CT 5pm PT), the #gyncsm community will be chatting about Advocacy. At times, we as patients are advocating for ourselves to ensure we receive the correct and appropriate care. As a caregiver we may be advocating for our loved one in order to have tests done quickly. As a gyn onc, we may be advocating for a patient to receive approval for a test from an insurance company.

But advocacy can be more than that. We may choose to work with an awareness organization to raise awareness of symptoms. Or advocate to increase awareness of inequities in cancer care or in support of the HPV vaccination to reduce cervical cancers. We may also advocate with our state and federal government to increase funding for gynecologic cancer research. We may advocate to be part of our cancer center's patient advisory board or to have a support group formed or for patients to receive more information about diet and exercise. We, at times, may face barriers in our efforts and have to change our methods. 

Join us on Wednesday as we chat about Advocacy for Yourself and Others. Hear from others about different types of advocacy, methods they used, barriers they faced, skills they learned, and groups that focus on advocating for gyn cancer patients.
 
Guiding our discussion will be the following Topic Questions:
T1: What are some of the different types of healthcare advocacy?

T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare?
T2b: What prompted you to "put on your advocacy hat"?

T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system?

T4: What are some of the barriers you have experienced in advocating for yourself and/or others? Any tips to pass along?

T5: What are some of the organizations, programs and resources that have helped you become a more confident advocate and/or provide opportunities for you to advocate? Feel free to share their twitter handle and/or website.

T6: Are there things that groups focusing on advocating for gyn cancer patients, those with and at-risk for hereditary cancer, and cancer in general could provide to better support you when it comes to advocacy? What issues in the gyn cancer community do we need to draw attention to? 
 
See you Wednesday!

Dee and Christina

Wednesday, June 8, 2022

June 8, 2022 Gyn Cancer Research News #SGOmtg & #ASCO22

This month we reviewed the research presented during the SGO and ASCO Annual Meetings. We had twenty-six participants and 1.2 million impressions. You may read our transcript here and analytics here

Resources may be found at the end of the post. 

T1: What #SGOMtg presentations did you personally find of most interest? Anything practice-changing? 


T2: Which #ASCO22 studies do you think might be of most interest to patients?


T3: What are some of the current "hot topics" in gynecologic cancer research? Are there things still up for debate that patients/survivors/advocates should be aware of?

  • For me ~ anything that involves #immunotherapy or #targetedtherapy is something I want to know more about in #cancer treatment 
  • There seems to finally be some great momentum around endometrial cancer and addressing disparities. That is exciting to see and long overdue
  • Maximizing #treatment/#maintenance in HRD test negative #OvarianCancer remains a critical unmet need! 
  •  Better understanding of how we can use molecular profiling in endometrial cancer to make treatment decisions is an important area of ongoing research. Where can we de-escalate treatment and who needs a more aggressive approach? 

T4: What research on palliative care, exercise, nutrition, survivorship do you think will impact patients lives the most - or that survivors should ask their providers about?

  • Studies showing ethnic minorities, especially black women, are less likely to understand their prognosis, less likely to use hospice and more likely to end up in the ICU. We need better communication! 
  • Don’t be afraid to ask about #sexualhealth or body image concerns. We don’t talk about these issues enough and they are so common in the wake of cancer treatment. 
  • I saw a study on better genetic education for ovarian cancer patients, but I don't remember a lot of quality of life studies in general. It was nice to see emphasis on financial toxicity though. 
  • Genetics and genomics become more and more important for cancer patients to understand and advocate for treatment plans that include testing.
  • COUNSELING! Diagnosis, treatment, aftercare, terminal care. It’s important for EVERYONE involved.
  • @fumikochino has done great work in the area of financial toxicity.
  • New Small Study finds virtual mindfulness-based intervention for sexual health as a feasible treatment option for #ovariancancer & #breastcancer survivors ⁦@NewsMedical#gyncsm #bcsm #womenshealth https://t.co/RZDW2qK9uA

T5: Which equity issues were presented at #SGOmtg and #ASCO22? Are we seeing progress?

T6: For our last topic, we'll let our participants ask any questions they have about recent gynecologic cancer research. Also, what do you want to see research resources focused on? Are there gaps in research you would like to see addressed?

  • I'd like women with gyn #leiomyosarcoma who are treated in a private practice to know that they can get a second opinion from a #sarcoma medical oncologist. Collaboration helps patients know all of their options for treatment.
  • T6 I heard about women having PARP resistance - like becoming platinum resistant. I wonder how many cycles of PARP does this start? 
  • https://www.lmsdr.org/ is partnering with @SARCtrials to help @JoannaPrzybyl with her research on ctDNA in #leiomyosarcoma. It would be great if ULMS could be better detected before surgery
  • We are excited about our @MDAndersonNews #PARPi alone trial for women with #OvarianCancer that have #BRCA mutations and need neoadjuvant therapy! Data coming soon


We will not be chatting in July but we hope to see you on August 10, 2022 at 8pmET for our chat on Advocacy for Yourself and Others

Have a safe July! 

Dee and Christina

 

RESOURCES 

Search Twitter for #SGOmtg  #ASCO22  #gyncsm  #leiomyosarcoma

 

SGO meeting : 

@stigetta - https://ocrahope.org/2022/04/ovarian-cancer-highlights-society-of-gynecologic-oncology-meeting-2022/

ASCO Post https://ascopost.com/Meetings/?m=SGO+2022+Annual+Meeting+on+Women%E2%80%99s+Cancer

Cancer Network https://www.cancernetwork.com/conference/sgo

Cancer Therapy Advisor https://www.cancertherapyadvisor.com/home/news/conference-coverage/society-of-gynecologic-oncology-sgo/sgo-2022/


ASCO Meeting :

ASCO Abstracts https://conferences.asco.org/am/abstracts-posters

ASCO Post https://ascopost.com/Meetings/?m=2022+ASCO+Annual+Meeting


Thursday, June 2, 2022

Gyn Cancer News - #SGOmtg & #ASCO22 June 8, 2022


Stay up to date with the latest gynecologic cancer research by joining the #gyncsm community as we discuss recent news from the SGO Annual Meeting (#SGOmtg) and the ASCO Annual Meeting (#ASCO22) during our June 8, 2022 chat at 8pmET. 
 
We will discuss HOT topics in gyn cancer research presented at both meetings, presentations that oncologists and patients who attended found most interesting, which research (including palliative care and survivorship) may make the greatest impact on patient lives, and cancer equity topics and the methods to improve the inequities. 

Chat Questions:

T1: What #SGOMtg presentations did you personally find of most interest? Anything practice-changing? 


T2: Which #ASCO22 studies do you think might be of most interest to patients?


T3: What are some of the current "hot topics" in gynecologic cancer research? Are there things still up for debate that patients/survivors/advocates should be aware of?


T4: What research on palliative care, exercise, nutrition, survivorship do you think will impact patients lives the most - or that survivors should ask their providers about?


T5: Which equity issues were presented at #SGOmtg and #ASCO22? Are we seeing progress?


T6: For our last topic, we'll let our participants ask any questions they have about recent gynecologic cancer research. Also, what do you want to see research resources focused on? Are there gaps in research you would like to see addressed?


 
We hope you can join us on Wednesday, June 8, 2022 at 8pm ET for this important chat. 

Dee and Christine
#gyncsm co-founders

Wednesday, May 11, 2022

May 11, 2022 Digital Health Fair

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.

@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/ 

@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).

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

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 #endcervicalcancerYou 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

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/

@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/

@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

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 @RobinSmrtPtient
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.  

@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!

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

Wednesday, May 4, 2022

Digital Health Fair - May 11, 2022 #gyncsm Chat

The #gyncsm community is happy to once again be holding a Digital Health Fair on Twitter. The Fair will be part of our regular chat on Wednesday, May 11, 2022 at 8pm ET. After a few initial questions for all participants, we will ask each of our attendees to share a few tweets highlighting their mission, website, resources/programs, and key awareness messages.

We have an amazing group of organizations joining us! Check out the list below as of May 11, 2022:

@Advovarianca_hu  Advanced Ovarian Cancer Network
@Alive_And_Kickn  Alive And Kickn
@CancerDotNet Cancer Dot Net/ ASCO 
@CancerHopeNetwork Cancer Hope Network
@CancerandCareer Cancer and Careers 
@ECANAwomen Endometrial Cancer Action Community for African-American Women 
@Elixirfund Elixir Fund 
@IamCervivor Cervivor
@InfoASHA National Cervical Cancer Coalition 
@NOCC_National NOCC
@ocrahope OCRA 
@Ovarcome Ovarcome 
@OvarianCancerCo World Ovarian Cancer Coalition 
@Power4patients Patient Empowerment Network 
@RobinSmrtPtient Smart Patients 
@SGO_org SGO 
@SHAREing SHARE
@StupidCancer Stupid Cancer 
@Ucan2020 Uterine Cancer Awareness Network 

Come join us and learn what resources are available for those diagnosed with a gynecologic cancer. 

Also, remember that May 8th is World Ovarian Cancer Day




See you on Wednesday.

Dee and Christina