Professional Educational Project (PEP)
An Awareness Campaign

What is the Professional Educational Project?
The Professonial Educational Project is an awareness campaign to educate professionals about this condition.  The ARPKD/CHF Alliance recognizes that the diagnosis of ARPKD and CHF can be emotionally devastating and that erroneous nomenclature, perceptions and prognoses continue to be utilized and disseminiated.  Accurate information is of paramount importance for correct diagnosis and appropriate managd care. 

Frequently perceived as a hopeless condition by professionals, it is crucial to eliminate the misconception that ARPKD/CHF always results in death.  One of our goals is to end the fatalistic outlook associated with this disease, by educating sensitively and sensibly, providing cautious yet optimistic information, keeping in mind the high proportion of newborn death it causes, but also the potential for a viable outcome if the newborn period is survived. 

Since it is rare condition, professionals frequently are not well informed.  When parents, caregivers and affected persons receive outdated and bleak information, there is a sense of hopelessness for survival or for a quality lifestyle.   An essential goal of this project is to illustrate that although chronic and progressive, this disease need not preclude the potential for a viable, good quality of life once the newborn period is survived. 

The more informed a health care professional is, the better informed and well cared for the patient will be.  When professionals and families are fully informed, enhanced decision-making will result.  Research suggests well informed patients/caregivers are more willing to follow directions, adhere to treatment, ask questions, thus increasing life expectancy. 

Why has the ARPKD/CHF Alliance chosen to implement this project?
As the “voice” of this disease, the ARPKD/CHF Alliance has a responsibility to refute inaccurate information, as it has a major impact in reaction and is of paramount importance in diagnosis, managed care and outcomes.  As long as inaccurate information is perpetuated, managed care will be less than optimal.  To do nothing is to deny a better future to those affected by ARPKD and CHF.  The ARPKD/CHF Alliance would like to not only promote realistic outlooks, but ultimately improve medical care approaches.

Professionals targeted by this program:
Geneticists, perinatologists, neonatalogists and obstetricians frequently are first to diagnosis this disease.  Many of them still perceive this to be unconditionally lethal.   Other medical professionals who care for this patient community: nephrologists, gastroenterologists, hepatologists, endocrinologists, social workers, nutritionists, nurses, pediatricians,  OB/Gyn doctor, geneticist, perinatalogist, neonatologist and family physicians, often view this condition discouragingly, disastrous, or fatal, passing on this mentality to ARPKD/CHF families.  When the patient population and newly diagnosed are misinformed, misguided or lead astray, this can have unfortunate and dire consequences resulting in over treatment, under treatment, lack of medical care or ill-conceived abortion. 

Although 30% of the newborns die at birth or soon afterward, the remaining 70% survive.  Living with a chronic and progressive disorder, many children grow to adulthood and lead productive lives.  The ARPKD/CHF Alliance would like all customary encountered health care professionals to be aware that for those who survive the newborn period, there is potential for a quality lifestyle with appropriate managed care.

Primary approach:
Develop and disseminate educational materials to health care professionals involved in the care and treatment of the ARPKD/CHF population.  Factual information about this disease, with access to diagnostic, prognostic, and clinical management information will support optimal managed care and improve outcomes.  Accurate information will trickle down to caregivers and patients, resulting in diminished feelings of hopelessness, helplessness, apprehension and anxiety, which are common.  The “Professional Educational Project” is a well-designed cycle of education – educate professionals and they will educate caregivers and patients.

Geographical area served by this project:
The scale and scope of the ARPKD/CHF Alliance’s “Professional Educational Project” is not limited to the United States but is global.

Group served:
Persons affected by ARPKD/CHF – prenatal infants, newborns, children, adults, caregivers and professionals.  ARPKD/CHF affects all ethical groups and has no boundaries. 

Funding sources for this project:
Our budget relies solely on donations.

How you can help:
Implementation requires people as well as financial resources to pursue and realize project goals.  The more persons involved in dissemination of materials, the sooner the goals can be realized. 

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