Member Profile: IVFB e.V.

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Our Story
The initiative for prevention and early detection of pancreatic cancer (IVFB e.V.) was founded in Germany in 2023. The mission of IVFB e.V. is to raise awareness, provide education and advocate for the prevention and early detection of pancreatic cancer. IVFB e.V. supports projects aiming 1) to identify risk factors or genetic predisposition, 2) to implement primary prevention 3) to increase early detection.
The activities of IVFB e.V. are ongoing and not limited to Pancreatic Cancer Awareness Month. IVFB members engage in public awareness and fundraising, they participate in advocacy and policy and provide continuous support to patients and relatives. Our team is multiprofessional. At the time being most members are medical professionals.They focus on raising awareness concerning cancer risks, primary prevention and early symptoms. They organize events to raise funds and establish a nationwide network of supporters. They approach families with hereditary pancreatic cancer, provide support and organize contacts for surveillance and programmes of early detection.

Being part of WPCC is crucial for them. They can share their experience and learn from each other. By speaking with a unified voice they will further raise global awareness. Early detection of pancreatic cancer should become one of Top 10 priorities of oncological research. The WPCC can provide up-to-date messages and advise health care politicians.

To learn more about the IVFB e.V., visit their Member Page

 

Member Profile: PLANETS Cancer Charity

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Our Story

PLANETS started in 2011 with a focus on pancreatic, liver and neuroendocrine tumour patients, initially with small aims to provide support groups and purchase additional equipment for the service.

It was quickly realized that there was a greater need for patient support and also the introduction of novel treatments. As we became more successful, other clinicians from different tumor specialties were keen to join us so that their patients could access the same benefits. We also decided that we should start to fund research into some of the most important evolving areas for cancer such as immunotherapy and genetics. So our initial small target soon was replaced by a much larger target.

PLANETS have funded researchers who are using data from the UK Biobank, a database of genetic and health information from half a million participants nationwide, looking for small variations in genes previously linked to pancreatic cancer. They then combined this genetic data with information on a person’s symptoms, lifestyle and medical history and used a computer model to establish what factors were most likely to increase a person’s risk of developing the cancer. The researchers say the findings could pave the way for a secondary screening programme for patients with new-onset diabetes who may be at greater risk of developing pancreatic cancer.

Awareness of PLANETS existence, a small charity with big aims who are supporting patients with pancreatic cancer and pushing the boundaries and providing access to the world’s most cutting-edge treatments to help the NHS to offer cancer treatments to patients from our region that are as good as any available worldwide as well as funding research to ensure that progress is made in treating and detecting pancreatic cancer.

To raise awareness of pancreatic cancer and its symptoms and early warning signs to help encourage early detection and also support and highlight our crucial research.

To learn more about the PLANETS, visit their Member Page

 

Member Profile: DOBSLO

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Our Story

Their story started in 1986, when the Cancer Patients’ Association of Slovenia (DOBSLO) was launched, first as assistance to women struck with breast cancer. They were granted total support during the time of illness and healing.

First the specially trained volunteers were offering face to face peer counseling while visiting the patients at the hospitals. Later on within the DOBSLO special groups were formed, where people gathered once a month under the guidance of oncological psychotherapist. While the first group started in the capital, many other followed all over the country.  And as the organization became an umbrella institution operating at the national level, it took under its wings patients with all kind of cancers.

Today main areas of focus still remain individual patients peer counseling by specially trained volunteers and support groups for patients with all kind of cancers, guided by professional assistance. At the Covid time on-line groups were formed and they still persist for the patients who are too sick to attend the groups meetings or who are far away from any DOBSLO center.

Next they have been developing an important publishing activity. Twice a year they issue a special magazine called Okno (meaning Window), intended for general and professional readers.

They have been publishing booklets for different kind of cancers including descriptions of various forms of every specific cancer, various methods of treatments and medication and a couple of the surviving patient’s stories.

Also are being published numerous leaflets about cancers.

An interactive website has been formed with all kind of information about cancers, like how to reduce the risks, early diagnostics, treatment information, video patients’ cases presentations, guided meditations, to name just e few.

Another important activity of our organization is encouraging people to participate in the cancer screening state programs.

The WPCC can assist us with providing information of the most recent clinical studies, new medication or treatment methods about pancreatic cancer. Or like WPCC used to do, organize live meetings where they got precious information from eminent doctors (like unforgettable patient’s presentation in Montreal – almost science fiction), where they got a lot of specific knowledge on nutrition, practical knowledge on how to deal with media for advocacy and many other professional (practical) skills every society like our own should acquire or/and update.

And of course meeting people from all over the world was priceless, exchanging precious information in formal and informal face to face discussions.

To learn more about the DOBSLO, visit their Member Page

 

Member Profile: Pancreatic Cancer Hope Foundation

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Our Story

The Pancreatic Cancer Hope Foundation  is a nonprofit foundation dedicated to raising funding and awareness for pancreatic cancer as well as patient support for patients and their families. They are based out of Allentown, Pennsylvania.

Their foundation had its humble beginning about 15 years ago when a Pennsylvania woman by the name of Jenn Loconte started a 5K run in memory of her mother, Joan. The race was held annually and was called J’s Run in memory of her mother and another young woman who lost her life to pancreatic cancer. As the race grew, the board of J’s Run decided to expand our focus and create a foundation. The Pancreatic Cancer Hope Foundation was officially created in 2019. They continue to hold J’s Run on the 1st Saturday in May as our signature event and primary fundraising event.

 

Since inception, their foundation has raised thousands of dollars and they are proud to say that through their efforts we have helped establish the first pancreatic cancer specific support group  within the Cancer Support Community of the Lehigh Valley, PA. The support community continues to provide patient and family support for pancreatic cancer patients and their families and Pancreatic Cancer Hope Foundation provides annual support to continue this important service.

Over the years they have provided funding to Lehigh Valley Health Network in Allentown,  Pennsylvania, St Luke’s University Medical Center in Allentown, PA and Johns Hopkins Hospital In Baltimore, MD to help these institutions in their pancreatic cancer research efforts.

Their latest patient support project was to help create a nutrition bank at Lehigh Valley Hospital to provide much needed nutritional supplements to pancreatic cancer patients.

They were very proud to sponsor a symposium this past November where they were excited to host a speaker from Memorial Sloan Kettering Hospital to speak on the progress of the newest pancreatic cancer vaccine trials. Another symposium is planned for this coming November.

As well as providing financial support, another large area of focus for their foundation is promoting awareness of pancreatic cancer and it is their hope that though our efforts as well as through the larger efforts of WPCC we can continue to promote awareness and attention to this disease.

To learn more about the Pancreatic Cancer Hope Foundation, visit their Member Page

 

 

 

Member Profile: Pancreatic Cancer Aotearoa New Zealand (PCANZ)

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Our Story

PCANZ was founded in 2019, after their founder lost their Dad to pancreatic cancer.

 

The main areas of focus for PCANZ is support, education, awareness and fundraising.

Currently, PCANZ is helping to support the Gut Cancer Foundation in fundraising towards clinical studies, as well as research by the ASPERT team in pancreatic enzyme replacement therapy.

The WPCC can help support PCANZ by helping to raise their profile, as they are too small to pay for SEO and so there are many people in New Zealand who have no idea that PCANZ exists

They are looking forward its 5th birthday this year, and so they want to make the PCAM in November the biggest one yet, and raise as much money as possible towards their cause. New Zealand’s survival stats are extremely poor compared to the rest of the world, and so putting NZ on the global map would be super helpful.

To learn more about the Pancreatic Cancer Aotearoa New Zealand (PCANZ), visit their Member Page

 

Member Profile: Arbeitskreis der Pankreatektomierten e.V. (AdP)

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Our Story

The Arbeitskreis der Pankreatektomierten e. V. (AdP) was founded in 1976 by patients in Heidelberg and has been a registered association since 1979. The AdP is headquartered in Bonn. The AdP will therefore soon be celebrating its 50th anniversary. The non-profit organization is comprehensively supported by the Deutsche Krebshilfe (DKH) foundation. The patron of the AdP is Prof. Dr. Dietrich Grönemeyer.

Doctors from all specialties and nutritional therapists have supported the AdP e.V. since its inception. The association has around 1,500 members in 60 regional groups, making the AdP the largest association for pancreatic cancer sufferers in Germany and its neighboring countries.

The aim of the AdP is to promote the health and rehabilitation of partially and totally pancreatectomized as well as non-operated pancreatic patients, with a special focus on cancer patients and their relatives. Every year, more than 21,000 people in Germany are diagnosed with a pancreatic tumor. The trend is clearly rising.

Education about pancreatic cancer

Information campaigns: Through targeted information campaigns on social media, on their website and in the local press, they can raise awareness of the symptoms and severity of pancreatic cancer.

Events: We are planning information evenings and workshops to engage directly with the public and pass on important information.

Greater public awareness

Media presence: They rely on press releases, interviews and articles in renowned media to draw attention to their cause.

Partnerships: By partnering with other health organizations and local associations, they can expand their reach and reach more people.

Promotion of research

Research collaborations: They work closely with universities and hospitals to support and advance innovative research projects.

Publicizing the risks

Prevention programs: They provide information on risk factors such as smoking, obesity and genetic disposition and emphasize the importance of early detection.

Educational materials: They provide easily accessible information on prevention and early detection through brochures, flyers and online resources.

Ongoing Projects

The AdP has been an established part of the spectrum of self-help groups in Germany for years. The content, the self-help of those affected by pancreatic cancer, requires a particularly sophisticated approach due to the very specific expertise required in dealing with pancreatic diseases and secondary conditions during the course of the disease or in the course of surgical treatment, for example.

The necessity and growing importance are clearly reflected in the almost 50 years of existence and constantly expanding profile of AdP’s work.

As a self-help organization for pancreatic cancer patients, it is their goal to provide more information about the serious diagnosis of pancreatic cancer, to achieve greater public awareness, to promote more research into the diagnosis of cancer and to make the risks of pancreatic cancer better known. They firmly believe that these measures can not only improve the quality of life of those affected, but also increase the general health literacy of the population. Together we can make a difference and better overcome the challenges of pancreatic cancer.

The WPCC already supports their goals. It is important that their goals are also pursued and supported internationally. The WPCC does this very well. As their activities are currently limited to German-speaking countries, the WPCC is their hope that their goals will also be coordinated and supported internationally.

They look forward to organizing World Pancreatic Cancer Day with the WPCC again in 2025, as they have done every year since the founding of the WPCC and their membership of this important international organization, to try to raise awareness of this serious disease.

To learn more about the Arbeitskreis der Pankreatektomierten e. V. (AdP), visit their Member Page

 

Member Profile: The Lustgarten Foundation

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Our Story
Established in 1998 from a need for better treatment options and outcomes for pancreatic cancer patients and their families, the Lustgarten Foundation continues to accelerate groundbreaking discoveries in understanding, detecting, and treating pancreatic cancer.

The Lustgarten Foundation is the largest private funder of pancreatic cancer research in the world. To date, the foundation has invested more than $282M in high-risk, high-reward research to accelerate and expand life-saving treatment options. Lustgarten boasts a unique, collaborative, science-focused strategy and has been a driving force in every major advancement in pancreatic cancer research for 26 years.

Ongoing Projects

The foundation currently funds 58 active research grants across 33 institutions, progressing the best science to transform pancreatic cancer into a curable disease.
The Lustgarten Foundation has been a proud member of the World Pancreatic Cancer Coalition since its inception, firmly believing that we can make a more profound impact together.
Learn more about the Lustgarten Foundation at www.Lustgarten.org or on social media (@LustgartenFDN).

To learn more about the Lustgarten Foundation, visit their Member Page

 

Member Profile: Pancreatic Cancer Aotearoa New Zealand (PCANZ)

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Our Story

PCANZ was founded in 2019, after their founder lost their Dad to pancreatic cancer.

 

The main areas of focus for PCANZ is support, education, awareness and fundraising.

Currently, PCANZ is helping to support the Gut Cancer Foundation in fundraising towards clinical studies, as well as research by the ASPERT team in pancreatic enzyme replacement therapy.

The WPCC can help support PCANZ by helping to raise their profile, as they are too small to pay for SEO and so there are many people in New Zealand who have no idea that PCANZ exists

They are looking forward its 5th birthday this year, and so they want to make the PCAM in November the biggest one yet, and raise as much money as possible towards their cause. New Zealand’s survival stats are extremely poor compared to the rest of the world, and so putting NZ on the global map would be super helpful.

To learn more about the Pancreatic Cancer Aotearoa New Zealand (PCANZ), visit their Member Page

 

Member Profile: Hirshberg Foundation for Pancreatic Cancer Research

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In 1997, the Hirshberg Foundation was established to fund groundbreaking scientific research, provide patient education and support, and sustain the hope that this cancer will be eradicated once and for all. To date, four of its five goals and mission pillars have been accomplished, with a cure being the final piece of the puzzle. Today, the Foundation offers a wide array of programs focused on accelerating pancreatic cancer research, comprehensive support services for patients, and raising awareness in the community.

 

OUR STORY

Agi Hirshberg set out on an extraordinary journey to lead the fight against pancreatic cancer in honor of her late husband, Ronnie. Determined to find answers, she made a promise that still holds true: she would be relentless in the fight against this disease, and she would never give up. Today, the Foundation is at the forefront of pancreatic cancer research and is a beacon of hope for patients and families facing this disease.

 

The Hirshberg Foundation’s research efforts began at UCLA with the establishment of The Ronald S. Hirshberg Chair in Translational Pancreatic Cancer Research and the opening of the Ronald S. Hirshberg Translational Pancreatic Cancer Research Laboratory. The Foundation’s world-renowned Seed Grant Program began providing early research funding. Soon after, the Foundation funded the UCLA Pancreas Tissue Bank and the Sahin-Toth Laboratory at UCLA.

Ongoing Projects

Seed Grant Program

Every year, the Seed Grant program provides research funding for innovative projects led by basic and clinical investigators. Over 120 research projects at institutions in the US and overseas have been funded. Projects focus on treatment/therapy, patient care, early diagnosis, detection, cancer biology, basic science, prevention/metabolism, and research core facilities.

UCLA Partnership

This longstanding partnership plays a crucial role in advancing research and improving patient outcomes. The Foundation has established laboratories, core research facilities, and the Pancreas Tissue Bank on campus. As a member of the Canopy Cancer Collective, our UCLA team is making great strides in nutrition, palliative care, genetic testing, clinical trial participation, and patient education. The clinical trial portfolio of the Agi Hirshberg Center for Pancreatic Diseases is also among the strongest in the country.

Agi Hirshberg Center for Pancreatic Diseases

The Center for Pancreatic Diseases continues to set the standard for state-of-the-art care. Patients are able to meet with surgeons, medical oncologists, gastroenterologists, palliative care specialists, dieticians, genetic counselors, clinical trials coordinators, and therapists from the Simms-Mann psychosocial care team – all in one location and often in one visit. The facility has made tremendous progress, assembling an ever-growing arsenal of tools to understand and mitigate the effects of the illness and advance its quest for greater patient comfort.

Symposium for Patients & Families

The 18th Annual Symposium on Pancreatic Cancer returns in April with many new topics and guest speakers. This invaluable event is provided free of charge and brings together patients, caregivers, medical professionals, and scientific researchers. The highlight of the day is the Survivor and Caregiver Panel with invited speakers sharing firsthand experiences, unique perspectives, and inspiration with survivors and caregivers.

To learn more about the Hirshberg Foundation, visit their Member Page


 

Member Profile: The Purple Iris Foundation

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The Purple Iris Foundation, established in 2012 by Christina Parrish, a 16 year survivor of Stage 4 Pancreatic Cancer, is a registered 501(c)(3) organization based in Brewer, Maine.

Ongoing Projects

The Purple Iris Foundation’s dedicated mission is to raise awareness, offer support, and inspire hope among individuals and families impacted by cancer. They achieve this through a range of support initiatives: They offer patient assistance grants, providing direct payments of up to $500 annually, along with monthly Hannaford gift cards and gas cards to assist Maine residents battling cancer in reaching their appointments.
Examples of covered expenses include rent, mortgage payments, heating fuel, car expenses, and more. This not only provides crucial support but also instills hope in those facing challenging circumstances. Additionally, they maintain regular contact via phone calls or emails to check on their well-being and offer navigation assistance through their cancer journey to those who request it. They also proudly illuminate Maine in purple during Pancreatic Cancer Awareness Month. This annual initiative holds a special place in the heart of our Founder, reflecting our commitment to advocacy and awareness. They are hopeful, that a spotlight would give them more exposure to the important work we do in Maine.

They are looking forward to working with the WPCC to really make more of an impact in patient lives and outcomes, as well as being able to assist more Mainers battling cancer.

To learn more about Purple Iris Foundation, visit their Member Page