Member Profile: Pancreasnetvaerket i Danmark

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Our Story

In May 2015, 75 patients and relatives met with surgeons and oncologists at Odense University Hospital for a day-long conference on the consequences of being diagnosed with pancreatic cancer, and the complex problems related to life with chemotherapy and a Whipple operation. The conference had been convened on the initiative of two patients, Niels Erik Olesen and Inger Marie Amdi, both of whom unfortunately have since passed away, with the support of oncologists at Herlev University Hospital in Copenhagen, and surgeons at Odense University Hospital, sponsored by the Danish Cancer Society, one of the most influential NGO’s in Denmark. A few weeks after the conference, a small group of patients and relatives gathered at the headquarters of the Danish Cancer Society to initiate the formation of a nationwide network of pancreatic cancer patients and their relatives. They called this new network “Pancreasnetvaerket i Danmark.” The first major activity of the network was a doctor and patient conference at  erlev University Hospital in Copenhagen on the first World Pancreatic Cancer Day, in November 2015. The conference was a great success, and has become a traditional event of the Danish organization on the annual World Pancreatic Cancer Day ever since.  In May 2016, Pancreasnetvaerket i Danmark was represented at the founding conference of the World Pancreatic Cancer Coalition in Orlando, Florida. And finally, in the spring of 2020, after five years of organizing as an informal network, Pancreasnetvaerket was able to establish itself as a formal nationwide organization.

From the outset, Pancreasnetvaerket understood that its main purpose was to render support, comfort and advice to fellow pancreatic cancer patients across the country. Most of them had experienced the horrifying feeling of being totally alone in a new and scary world after being confronted with the diagnosis of pancreatic cancer and undergoing chemotherapy, or perhaps the colossal Whipple surgical procedure. Initially, the Danish Cancer Society allowed them to establish two groups for patients with pancreatic cancer on their Cancerforum, a private internet discussion forum for cancer patients and their relatives. This made the formation of a rudimentary network of fellow patients possible.
But it soon became clear, that they somehow needed to meet face to face, and after a couple of small local meetings in Copenhagen, the breakthrough came with the aforementioned conference at Odense University Hospital in May 2015. That conference provided a format that could fulfill an important double purpose. Presentations by leading Danish surgeons and oncologists would give them insight into the latest research developments, and the newest  progress in diagnosis and treatment, in other words, give them hope. At the same time, the conference would also provide patients and relatives with an opportunity to meet and exchange their experience, problems and solutions with others in the same situation as themselves. Nobody should ever again feel alone in this strange and scary world of pancreatic cancer. So, this has been the main activity of Pancreasnetvaerket in Denmark for almost 10 years now: rendering support and comfort to fellow patients and their spouses and families over the phone and on private fora on the internet, and arranging three to four conferences a year for patients and doctors, primarily at university hospitals that are specialized in treating patients with pancreatic cancer. In this endeavor, they have received full and enthusiastic support from the medical community. Surgeons, oncologists, radiologists and nurses, are all eager to participate in their  events, and by now, they know almost everyone who is involved in treating pancreatic cancer in the small Kingdom of Denmark.
For a small organization like theirs, it is a blessing that they need not spend their time, effort and limited resources on fundraising. Laws and regulations put strict limits on how much the medical and pharmaceutical industries are allowed to finance patient organizations. This is to prevent such organizations from becoming advocates for special commercial interests. Instead, large NGO’s like the Danish Cancer Society are allowed to pick up the tab, with no strings attached. Thus, their budget for conferences, meetings and travel expenses reaches far beyond what membership dues and private donations otherwise would allow. Likewise, it makes no sense for them to get involved in fundraising for specific pancreatic cancer research projects, like many of their fellow patient organizations in the U.S. nevertheless, their tiny organization does play a pivotal role in pancreatic cancer research in Denmark. When doctors and researchers at the Danish hospitals and universities seek funding for new studies from public and private financial sources, documentation of expected benefits for the related patient group is often a standard requirement. For that purpose, their organization receives numerous requests for letters of recommendation for new research projects every year. And over the years, they have gained quite a reputation for delivering well-formulated and convincing recommendations of pancreatic cancer studies and research projects.
In a country with a comprehensive public healthcare system, the playing field for a patient organization is somewhat different than the one facing similar organizations in the U.S. The public health structure of everything from primary care physicians, to university hospitals, and national planing of all major healthcare programs and clinical procedures, offers unique opportunities for patient organizations to gain influence and to sit at the table when decisions are made. A couple of years ago, Pancreasnetvaerket was invited to have a seat on the steering committee of the Danish Pancreatic Cancer Group, DPCG, the professional society of the surgeons, oncologists, radiologists and pathologists involved in treating pancreatic cancer. Likewise, the Danish Health Authority invited them to sit on the commission for the revision of the clinical guidelines for the treatment of pancreatic cancer, and presently, while the Danish government is preparing to present to the parliament the Fifth National Cancer Plan, they were invited to attend an early planning session, and to submit written testimony.
A few years ago, when Denmark decided to establish a National Genome Bank, NGB, they were invited to join the Ethics Committee for the National Plan for the Development of Personal Medicine, as a part of the preparation for the NGB. And when the NGB went in operation two years ago, pancreatic cancer was included among the initial limited list of diseases with access to full genome sequencing. Representing a small, but significant group of cancer patients, gives them  political clout somewhat stronger than one would expect. Politicians listen when they speak. A few years ago, they learned that the oncologists at Herlev University Hospital in Copenhagen had unsuccessfully been lobbying for years for the necessary funds to establish a regional center for the application of medical treatment of pancreatic cancer. A very good idea, in which they immediately became engaged.  At first, they ensured the full backing for the project from the Danish Cancer Society, by arranging a meeting with the national leadership, where the doctors from Herlev Hospital could present their plans. Next, they began lobbying the political leadership of the Copenhagen Region. Here, the ideas of a regional center for the medical treatment of pancreatic cancer sounded much better when presented by patients, than when it came from doctors who could be suspected of merely asking for more money. So, in the fall of 2020, the political council of the Copenhagen Region decided to establish a “knowledge center” for the medical treatment of pancreatic cancer in Herlev University Hospital in Copenhagen.
When the World Pancreatic Cancer Coalition was established in Orlando, Florida back in 2016, the discussion among representatives from different nations in many ways revealed that they were confronted with the old philosophical problem from Plato’s dialogues known as “the One and the Many.” The One was easily identified as their common wish to eradicate the scourge of pancreatic cancer from the surface of the Earth, while the Many was the diverse healthcare systems in the different countries they represented. Of course, there is but one solution to the One problem, namely, a cure for pancreatic cancer, once and for all, but to achieve this through the activity of the community, and by patients and their relatives, requires insightful adaptations to the cultures and the healthcare systems in the countries in which they live. And that’s just exactly what they are striving for in the World Pancreatic Cancer Coalition.
To learn more about the Mid-Shore Pancreatic Cancer Foundation, Inc., visit their Member Page 

Member Profile: Mid-Shore Pancreatic Cancer Foundation, Inc.

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Our Story

Bill Shrieves was diagnosed with pancreatic cancer in November, 2010. After a Whipple procedure that month, the cancer metastasized to his liver and became stage 4. For the first half of 2011 he was in chemotherapy. Colleagues and friends wanted to do something to support Bill, so they began holding Gospel Concerts. The Pancreatic Cancer Action Network had provided great support for Bill in his cancer journey, so the proceeds from these concerts went to them.

After a few years, the group wanted to focus on supporting pancreatic cancer patients in their community. They became a 501 (c) (3) nonprofit with the simple mission of providing hope and support for people diagnosed with pancreatic cancer on the Eastern Shore of Maryland.

Their primary focus is direct patient support. They provide information for newly diagnosed patients. Since there is no public transportation in our area, we provide transportation to treatment locally and to and from Baltimore, Maryland. They have helped with utility bills, rent, medical expenses, groceries, respite for family caregivers, and moving expenses. They even provided a new set of false teeth for a pancreatic cancer patient. Over the years they have helped 42 pancreatic cancer patients and invested over $14,500.

Another focus is Outreach. They participate in local events to raise awareness about pancreatic cancer risk factors and symptoms. In 2023, they held a seminar designed for clinicians involved in patient care. The program featured presentations by three leading University of Maryland Medical System oncology specialists and was very well attended.

Finally, each year they make a donation to pancreatic research. Over the years, these donations have totaled over $24,000.

They are looking for ways to reach the local medical community, particularly Primary Care Physicians to raise awareness of new developments in pancreatic cancer diagnosis and treatment. The link between new onset diabetes after age 50 and pancreatic cancer is one important topic for communications. They are in a rural area, but close to major medical institutions in Baltimore. Early referrals of pancreatic cancer patients is critical to outcomes.

Perhaps the biggest benefit they could derive from the WPCC would be interactions with other members large and small to share information.

To learn more about the Mid-Shore Pancreatic Cancer Foundation, Inc., visit their Member Page 

Member Profile: The Reaumond Foundation

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Our Story

The Reaumond Foundation was founded on October 26th, 2018, one year after the passing of Robert Reaumond to pancreatic cancer. It was established to honor Bob’s legacy and continue his fight against one of the most deadly cancers. With pancreatic cancer being the third leading cause of cancer-related deaths in the United States, the foundation seeks to raise awareness, fund research, and provide critical support for families facing this diagnosis. Since its inception, the foundation has raised over $2.5M to support these efforts.

The Reaumond Foundation focuses on three main areas:
Pancreatic Cancer Research – They fund cunning edge research aimed at improving early detection, advancing treatment options, and ultimately finding a cure for pancreatic cancer, which has a 5-year survival rate of just 12%. Assisting Families – They offer tailored financial assistance to families facing the burden of pancreatic cancer, helping with transportation, medications, lodging, and day-to-day expenses so they can focus on care and recovery. Homes of Hope – Through the Homes of Hope program, they provide affordable housing for patients traveling to MD Anderson Cancer Center, the nation’s top-ranked cancer hospital. This initiative helps alleviate the financial burden of housing, allowing families to stay close to their loved ones during treatment without worrying about high living costs.
The Reaumond Foundation is focusing on expanding both their research funding and Homes of Hope program. They are actively working to increase support for cunning edge research into early detection and treatment options for pancreatic cancer, which remains one of the deadliest forms of the disease. Additionally, their goal is to grow their Homes of Hope program to assist more families in need of affordable housing while receiving treatment at MD Anderson Cancer Center. Every dollar raised for this initiative helps ease the financial burden that comes with traveling far from home for life-saving care.
The WPCC can support The Reaumond Foundation by helping raise awareness about pancreatic cancer and the critical need for research funding. Additionally, the WPCC can help expand their network of supporters through sponsorships and fundraising efforts that ensure more families receive financial assistance, housing support, and access to life-saving treatments.
In the next year, they’re excited to partner with the WPCC to grow their fundraising efforts and raise awareness for pancreatic cancer. They look forward to expanding their Homes of Hope program to assist more families with affordable housing during their treatment at MD Anderson, and to continue increasing funding for pancreatic cancer research. Together, they hope to make significant strides in improving outcomes for those battling this devastating disease.
To learn more about the Reaumond Foundation, visit their Member Page

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