Our Foundation has been established to eliminate the life-threatening PLN heart disease p.Arg14del. This genetic disorder causes heart diseases (cardiomyopathies, arrhythmias…) whereby the pump function of the heart muscle is significantly defective. PLN gene carriers are burdened with serious heart failure problems which may lead to a heart transplant, ventricular assist devices or even sudden premature death.
> Scientific PLN research
Our Foundation is continually involved in scientific research projects. We have expanded our network in the past years with an (inter)national joint venture of innovative Dutch and worldwide Research Centers. Thanks to you and your donations, our Foundation is able to focus even better at research on diagnostics, treatment and healing of heart muscle diseases caused by a Phospholamban gene mutation (PLN).
Prof Dr. Roger Hajjar is non-paid scientific advisor to the Phospholamban Foundation.
Together with you, our PLN Foundation has the following objectives:
Financing of research projects on the treatment and healing of PLN heart diseases, such as cardiomyopathies, but also arrhythmias, heart transplant and donorship.
Granting of financial support to PLN patients; insofar as they have insufficient financial capacities to personally cover their health care costs.
Performing all other health care actions related or beneficial to the above in the broadest sense of the terms.
> PLN Foundation. Foundation of patients for patients.
Our Foundation has been established by volunteers or people suffering from PLN, family members and their loved ones, and tries to inform PLN gene carriers as much as possible about the latest developments and PLN studies. We also can establish contact between fellow PLN sufferers in order to share their own experiences and dilemmas… because we all are family and supporting each other is important in this disease process!
Below an overview of all our PLN related Foundation activities:
You can read the experiences and personal stories of other PLN patients on our website and Social Media. Do you want to help other PLN family members by sharing your own story? Please contact us and send us a short article about it. Your publication will be published on our website and will also be shared on Social Media. You can also tell your story anonymously if you wish; we have full respect for your privacy.
An ethical matter or a small survey on your own experience in specific situations… take the poll! Please participate in our online polls because your opinion is important. Have a look on our website and Social Media for more information… and make your voice heard!
YOUR CONTRIBUTION IS IMPORTANT!
Help us to eradicate PLN genetic heart disease! Support our PLN Foundation by making a periodic or one-off donation… you will donate however for a better LIFE. Thank you in advance.
Pieter Glijnis | Chairman
Evert de Boer | Secretary
Gerlof de Vries | Treasurer
Our Foundation Board members are neither receiving remuneration, nor indemnities for their services.