PEN Partner Archives

LACNETS

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Learn Advocate Connect Neuroendocrine Tumor Society (LACNETS) provides a community of support and education for neuroendocrine tumor (or neuroendocrine cancer or NET) patients and caregivers.

Learn

LACNETS’ educational programs, including webinars, patient education conferences, a video library, podcast, and blog, provide information on diagnosis, treatment options, research and resources. LACNETS develops patient-friendly educational content that brings the latest medical information and research studies to NET patients and caregivers.

Advocate

LACNETS advocates for all people impacted by this rare disease to improve health outcomes through early diagnosis. We raise awareness about neuroendocrine and carcinoid cancers among healthcare professionals and the public.

Connect

LACNETS’ inclusive global community includes NET patients, family members, and caregivers. LACNETS makes it possible for patients to share experiences, encouragement, and hope through support groups, Health Coaching, and NETCONNECT, a buddy program connecting a newly-diagnosed NET patient with a long-time patient.

Menopause Mandate

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Menopause Mandate is a group of motivated women from all walks of life who share a common interest in perimenopause and menopause. We are devoted to creating a framework of support to achieve everyone’s ultimate goal of revolutionizing the support and advice women receive from both our healthcare system and wider society.

Menopause Mandate Resource

  1. Menopause and Breast Cancer – Interview with Dr. Corinne Menn

 

Iowa Cancer Consortium

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The Iowa Cancer Consortium is Iowa’s statewide comprehensive cancer coalition. As a leader in cancer control, the Iowa Cancer Consortium offers the state’s cancer partners access to resources, expertise, and non-competitive collaboration across traditional boundaries for a bigger impact in cancer prevention, early detection, treatment and quality of life.

Black Health Matters

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Black Health Matters believes that purposeful living is the foundation of health. They are dedicated to empowering Black individuals and communities to intentionally prioritize their well-being, advocate for necessary resources, and cultivate supportive environments that lead to improved health outcomes.

Their mission is to inspire meaningful change through purpose-driven health initiatives for Black Americans by bridging the gap for health equity in our community with evidence-based disease management and wellness resources.

They provide a wellness platform that connects the healthcare industries, advocacy organizations, civic organizations, religious groups and historically Black fraternities and sororities to enrich the culture and experience of the Black community.

Save Your Skin Foundation

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Save Your Skin Foundation is a national patient-led not-for-profit group dedicated to the fight against non-melanoma skin cancers, melanoma and ocular melanoma through nationwide education, advocacy, and awareness initiatives. Their site offers:
  • Patient information on diagnosis and treatment options, including clinical trials
  • 1-800 telephone hotline for immediate assistance
  • Monthly Patient Fireside Chats
  • Webinars and video resources
  • Emotional and mental wellness resources
  • Personal 1-on-1 support for those touched by cancer
  • Resources for children and their caretakers
  • Information and support for those with ocular melanoma
  • The I’m Living Proof initiative, offering peer-to-peer support

ABC Global Alliance

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The ABC Global Alliance, a non-profit association registered in Portugal, is a multi-stakeholder platform for all those interested in collaborating on common projects related to advanced breast cancer (ABC) around the world. We are made up of people and organisations who are committed to develop, promote and support tangible improvements that will ultimately create awareness and actions that will improve and extend the lives of patients living with ABC worldwide.

The goal of the association is to improve and extend the lives of women and men living with ABC in all countries worldwide and to fight for a cure, to raise awareness of ABC and lobby worldwide for the improvement of the lives of ABC patients.

ABC Global Charter

The ABC Global Charter has been developed to address the most urgent and actionable gaps in the treatment and care of patients with advanced breast cancer (ABC) and define achievable and realistic goals to ultimately improve and extend their lives. These gaps and corresponding goals have been identified through intense discussion with all stakeholders involved in the field but mostly by patients and advocates.

It aims to drive change in the care of patients with ABC, tailoring actions to make them relevant and feasible for different geographies and capacities. The Actions for Change aim to achieve near and longer-term goals, to give patients a voice, to bring patient needs to the fore for driving decision-making and ultimately improve and extend their lives.

VHL Alliance

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The VHL Alliance exists to empower, educate, and encourage families experiencing VHL. Approximately 10,000 Americans have VHL with 80% inheriting it from a family member and 20% being first in family. The VHLA recognizes 40 VHL Clinical Centers of Excellence nationwide to provide coordinated care and advance VHL research. VHL Alliance Resources found here.

About VHL

Everyone has a VHL gene. When it is mutated from this genetic condition, the body’s ability to suppress tumors goes away. For a lifetime, people with VHL will experience cancerous and/or noncancerous growths in multiple areas of the body. There is no cure. Annual surveillance and numerous surgeries are the predominant treatment. A promising new drug therapy provides hope, however, VHL continues to be a highly disruptive and life-altering condition. 

PatientPoint

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PatientPoint® is a leading digital health company that connects patients, healthcare providers and life sciences companies with the right information in the moments care decisions are made to influence patient behavior and empower better health.

Global Liver Institute

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Global Liver Institute‘s mission is to improve the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.

Resource

GLI Resource – Liver Cancer Lessons

  • Encompasses the entire disease continuum, these resources fill gaps in liver cancer awareness and education

SHARE Cancer Support

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SHARE Cancer Support is a national, peer-led 501(c)(3) nonprofit organization that supports and educates anyone who has been diagnosed with breast or gynecologic cancers, and provides outreach to the general public about signs and symptoms. SHARE is dedicated to serving people of all races and cultures, backgrounds and identities. Because no one should face breast, ovarian, uterine (endometrial), cervical or metastatic breast cancer alone.

Resources

Sister-2-Sister Mentoring Program for Black Breast Cancer Survivors

TriCan Health

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TriCan Health helps pancreatic cancer patients and their caregivers learn about treatment options and find clinical trials. Our mission is to empower patients with cancer to advocate for their treatment options and to collaborate with their care team to find the best, most advanced treatments available.

The Bone Marrow & Cancer Foundation

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The Bone Marrow & Cancer Foundation, founded in 1992 is a national organization dedicated to improving the quality of life for pediatric and adult cancer and transplant patients and their families by providing vital financial assistance, comprehensive resources, educational information, physician referrals and emotional support programs.

Resources:

  • Bone Marrow & Cancer Foundation Flyer
  • Cancer Buddy Flyer
    • CancerBuddy is the first peer support network for cancer patients, survivors and caregivers that helps people affected by cancer find a new community going through similar experiences. It’s a great way for people to connect by diagnosis, treatment, side effects, age, interests, hospital and geographical location. CancerBuddy goes beyond individual connections; it features expert-moderated groups that provide valuable information and support. CancerBuddy makes cancer a little less lonely. Download the free app on the App Store or Google Play.

Cholangiocarcinoma Foundation

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The Cholangiocarcinoma Foundation (CCF) offers one-on-one patient and caregiver support, connects individuals to resources, and funds important research. CCF’s mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer). Founded in 2006 in Salt Lake City, UT, by a family who lost a loved one to cholangiocarcinoma, CCF has grown to become the leading global resource in research, education, and public awareness.

TransformaWell

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TransformaWell works to increase health equity and eliminate health disparities impacting underserved communities through education, empowerment, outreach and collaboration with local organizations to inspire healthy lifestyle change. They focus on the prevention of chronic conditions such as obesity, diabetes, hypertension and cancer, disproportionately affecting underserved populations by working to improve health and well-being through programming and educational resources focusing on nutritious eating, stress reduction and fitness. At TransformaWell they are on a mission to help make a change that can save lives!
Their vision is equitable access to health resources and improved wellness for all.

What They Do

Their initiatives include wellness events, educational resources, increasing access to healthy foods, community outreach through collaboration with private and public organizations such as churches, schools, community centers and park districts.

UCIR

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UCIR is dedicated to empowering patients with comprehensive resources on cancer immunotherapy. Their platform provides clear, accessible explanations and visuals on cutting-edge therapies. Patients can explore an extensive database of FDA and EMA-approved immunotherapy drugs.
Visit UCIR.org to discover how the immune system can be harnessed to fight cancer and gain the knowledge to make informed decisions about your treatment options.
UCIR is part of the Fritsch Foundation, a 501c3 organization, EIN 47-3974944.