About us

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.

Finding and informing people with PLN mutation.

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:

YOUR OWN STORY

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.

NEWSLETTERS

We regularly keep you informed about all PLN related matters and ongoing or upcoming Foundation activities. Do you wish to receive this news & features directly into your mailbox? Please subscribe to our mailing list. At any time, you can unsubscribe for our digital news (Opt-Out Privacy Policy) if you no longer wish to receive our newsletters.

SURVEYS & POLLS

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!

SOCIAL MEDIA

You can find us at social media like Facebook, LinkedIn and YouTube. Do you have a Facebook account? Follow us and stay tuned for the latest news. On YouTube you can find videos from the PLN Foundation.

Administration

Pieter Glijnis | Chairman

Evert de Boer | Secretary

Gerlof de Vries | Treasurer

Eric Kok  | General Boardmember

Jan van der Zouw  |  General Boardmember

Remuneration Policy

Our Foundation Board members are neither receiving remuneration, nor indemnities for their services.

Beleidsplan Stichting PLN 2019

Rapportage 2018 Stichting Genetische Hartspierziekte PLN