Do you know someone with PLN?
As a foundation, we want to share as much important information about PLN as possible. We are here for carriers to inform and support them where we can. We are also here for you as a family member, friend, acquaintance, or any other involved person. How can you deal with PLN in your environment?
Family member of someone with PLN?
Has someone within your family been diagnosed with the PLN mutation? Because PLN is a genetic heart muscle disease, this may mean that you might also be a carrier of the mutation The carrier within your family has received a family letter from the cardiologist. What can you do next?
Testing for PLN
Your DNA will be tested for the PLN mutation. Each hospital has its own procedure and therefore implements this in its own way. You are never obliged to be tested. We also understand if you (still) do not want to know the answer. Discuss this with a professional and determine what is the best choice for you.
Show Understanding
Everyone deals with the news about PLN in their own way. As a foundation, we advise having understanding for each other and engaging in conversation together. Alone, you go fast; together, you go further! Therefore, stay in conversation and seek support from each other. There is also always the possibility of professional support.
Do it together
Together, we can eliminate PLN from the world! That's why we bring as many carriers, stakeholders, and researchers together as possible. Are you also a carrier or not? You are always welcome to come along to our information sessions or certain events (even if you are not a carrier).
For Close Ones
Are you not a carrier of the PLN mutation but closely involved with someone who carries the mutation? We have 5 tips for you!
Some carriers experience many symptoms due to the disease, including chest pain, fatigue, shortness of breath, heart rhythm disturbances, and sudden cardiac death (in rare cases). Be understanding and help a carrier to set and respect their boundaries.
Some carriers may not show visible symptoms. However, this does not mean that these symptoms do not exist. Be understanding to carriers who may appear symptom-free from the outside. You never know what they are experiencing.
As a foundation, we invest a lot of time, energy, and money in providing accessible information about PLN. We do this because we value raising awareness about the disease. Therefore, you as loved ones can also go through the information on our website to get a better understanding of the disease.
Do you want to learn even more about PLN and interact with like-minded people? You are always welcome to attend one of our information sessions or other events. These are free to attend, and you will always gain new knowledge and meet new people.
Is someone in your environment affected by PLN? This news may also affect you! That’s why we want to mention that you can also seek professional support.
What can you do?
Other possibilities
Donate
As a foundation, our mission is to eliminate PLN from the world. Therefore, we finance scientific research and bring researchers together. Research for an affordable treatment for PLN requires a lot of money. We are making good progress, but we are not there yet. Donations are always welcome!
Newsletter
Do you want to stay informed about all developments related to PLN? You can subscribe to our newsletter. We usually send a newsletter once a month with updates on research and invitations to events. This way, you will always have the most important news in your inbox! You can also unsubscribe at any time.
Take Action
Do you want to take action for PLN as a loved one? You can! On our special website, you can start an action. This way, you can raise money for research! You can come up with your own action, set your own amount, and then start your action. As a foundation, we can provide support in various ways.