Missie:
Hét (inter)nationale expertiseplatform voor inspiratie, innovatie & ontwikkeling voor en door CUP patiëntenorganisatie(s), zorgprofessionals en (wetenschappelijke) onderzoekers.
Visie:
Binnen 1 generatie is de diagnose onbekende primaire tumor niet meer van belang want iedere kankerpatiënt heeft dan toegang tot gepersonaliseerde diagnostiek, behandeling en zorg.
Nederland is een internationaal voorbeeld in de diagnostiek, behandeling en zorg voor patiënten met PTO.
Doelen:
Tot 5 jaar (2028):
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De Nederlandse klinische richtlijn is ge-update (2024) en wordt vanaf nu elke jaar 5 ge-update
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Het PTO-zorgpad is geïmplementeerd en geborgd in het Nederlandse zorgsysteem en wordt elke 2 jaar geëvalueerd. Hierdoor is er voor iedere PTO-patiënt gelijke toegang tot gepersonaliseerde diagnostiek, behandeling en zorg
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De doorlooptijd wordt versneld van 6 naar 5 weken door inzet van innovatie, logistieke en administratieve verbeteringen
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Het PTO-zorgpad wordt uitgebreid met behandeling & (na)zorg
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De awareness van PTO is vergroot op (inter)nationaal terrein, dit uit zich door het organiseren van een congres van eens in de twee jaar
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De dataverzameling is landelijk geborgd en wordt iedere 2 jaar geëvalueerd op klinische/wetenschappelijke waarde en aangepast conform nieuwe ontwikkelingen, binnen de Nederlandse Kankerregistratie, PALGA, HMF, waardoor het effect van diagnostiek en behandeling op overleving en kwaliteit van leven gemeten kan worden
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Klinische studies zijn ook toegankelijk voor PTO-patiënten
Tot 10 jaar (2033):
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Het PTO-zorgpad is geïmplementeerd en geborgd in het Nederlandse zorgsysteem en wordt elke 2 jaar geëvalueerd. Hierdoor is er voor iedere PTO-patiënt gelijke toegang tot gepersonaliseerde diagnostiek, behandeling en zorg
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De doorlooptijd wordt versneld van 5 naar 4 weken door inzet van innovatie, logistieke en administratieve verbeteringen
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Eerste- en derdelijnszorg worden ook gekoppeld aan het PTO-zorgpad
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De dataverzameling is landelijk geborgd en wordt iedere 2 jaar geëvalueerd op waarde en conform aangepast nieuwe ontwikkelingen, binnen de Nederlandse Kankerregistratie, waardoor het effect van diagnostiek en behandeling op overleving en kwaliteit van leven gemeten kan worden. Er is ook onderzocht met welke internationale vergelijkbare databases de Nederlandse data kan matchen/vergeleken worden, om zo ook op internationaal terrein van waarde te zijn.
Registratie KvK
CUPP-NL is een stichting geregistreerd bij de Kamer van Koophandel onder het kvk nummer 83209298 en RSIN nummer 862770907.
Board
Warnyta Minnaard
Warnyta Minnaard (1989) is one of the co-founders of Missie Tumor Onbekend and chairman of Stichting Vrienden van Hederik. Warnyta lost her partner Hederik at age 32 amidst an ongoing 6-month diagnostic trajectory but without a diagnosis and treatment from leptomenigial metastases from a CUP in early 2019. This experience drove Warnyta on a mission to help change the desastrous outlook for current and future CUP patients. It’s her goal to expedite access to better (molecular) diagnostics, improve knowledge/awareness/research interest of CUP, and enhance the cancer care pathways towards personalised treatment and psychological and palliative support for patients and their families. One of her biggest milestones to date has been that Missie Tumor Onbekend has been a succesful partner in getting Whole Genome Sequencing Dutch parliamentary approval in February 2021, which resulted in WGS becoming nationally insured care for CUP patients in the Netherlands by April 2021.
Petur Snaebjornsson
https://www.avl.nl/specialisten-medewerkers/specialisten/pathologen/petur-snaebjornsson/
Partners
Missie Tumor Onbekend
Missie Tumor Onbekend (meaning: Mission Tumor Unknown) is the national Dutch support and advocacy organization for patients and their caregivers with cancer of unknown primary. Missie Tumor Onbekend was created in 2020 in a joint collaboration between two foundations (Stichting Sterren / Stichting Vrienden van Hederik) both set up by family members of deceased CUP patients. We are a member of Nederlandse Federatie van Kankerpatiëntenorganisaties (NFK) via Platform Zeldzame Kankers (PZK). Furthermore, Missie Tumor Onbekend is a valued partner and source of information for medical professionals, researchers, health insurers and other professionals active in the field of CUP.
Besides providing detailed information about CUP and support to patients in their disease journey on where they could find access to care and (psychological and palliative) support; Missie Tumor Onbekend strongly believes in being at the forefront of advocating and co-developing solutions and cures for CUP. By innovating cancer diagnostics and developing more targeted tumor agnostic treatments there is a real opportunity for CUP to no longer be this inconclusive and hardly treatable diagnosis, but ultimately to no longer exist. By increasing the availability of better more personalized diagnostics that could improve the recognition of a CUP, these lessons learned could also support enhancing detection methods for other cancer types as CUP is technically a reflection of undetectable primary cancer types.
Comprehensive Cancer Center, the Netherlands
Netherlands comprehensive cancer organisation (IKNL) is the quality institute for oncological and palliative research and practice. IKNL collaborates with healthcare professionals and managers and patients on the continuous improvement of oncological and palliative care. With data from the Netherlands Cancer Registry (NCR), we enable health care professionals, policy makers and others to reflect on cancer care and prevention.
SJK
The Sarah Jennifer Knott Foundation was established following Sarah’s death from Cancer of Unknown Primary. In honour of Sarah’s immense bravery, her family and friends set up the SJK Foundation in an effort to promote awareness, education and research into Cancer of Unknown Primary (CUP) to help make the unknown known. Also the SJK Foundation hopes to honour and continue Sarah’s mother Jenny’s charity work, whom also lost her life to cancer at a very young age.
NFK/PZK
NKF (in English: Dutch federation of cancer patients organizations), established in 2019 the Patient Platform for Rare Cancers (PZK) to provide support tot people with a rare cancer or CUP. In order to properly represent their interests, it is important to know what the experiences and needs of these patients are when it comes to quality of care. With the donate your experience poll, insight is gained to improve the quality of care.
Lubbers & Dijk Notarissen
At Lubbers en Dijk notaries, four civil-law notaries deal with personal and family law, corporate law and real estate law on a daily basis. They are supported by an expert team of motivated, committed and experienced colleagues.
CUP Foundation – Jo’s friends
CUP Foundation – Jo’s friends was established in memory of Jo Symons who died with CUP in September 2006 a few days after her 46th birthday. Jo, a graphic designer, was diagnosed with cancer, and the primary site could not be identified. Different tests produced different ideas. The initial suggestion, following the biopsy of a secondary tumour, was of Ovarian cancer. This was discounted and Jo was treated initially for Breast and then Pancreatic cancer. Jo endured 3 different chemotherapy regimens over 8 months before she died. Her primary remains ‘unknown’. (For further background see CNN report.)
To her family and friends it seemed incomprehensible that, in the 21st century, it was not possible to make a diagnosis and that little was being done to promote awareness and research; or to offer information and support to CUP patients and carers.
Cancer of Unknown Primary (CUP) Foundation – Jo’s friends was registered by the Charity Commission with number 1119380 on 24 May 2007.
