Welcome to families and caregivers of patients newly diagnosed with MVID.
Being diagnosed with MVID is not an easy time, and you have every reason not to want to be here.
Nevertheless, our understanding of the disease, the genes involved and their consequences have evolved dramatically in recent years. Scientific and medical research is making great strides (even if it's never fast enough for us), and there is hope for all MVID patients to improve their quality of life in the medium term, and to one day hope for a therapy.
L'Association Cure MVID aims to help families understand the disease, but also to keep you informed about ongoing research projects that will bring us one day closer to a cure.
Whatever your situation, it's easy to get involved and make a difference right now to help us achieve this goal!
Here are the top 5 ways to get involved now!
Visit our website and bookmark it
Make this site your first stop and your main destination for finding out more about all things MVID.
Don't forget to use our glossary to help you understand new medical terms.
1
Follow us on social networks
You can join the Cure MVID Facebook page and also our Twitter account to keep up to date with the latest news on MVID.
If you're located in North America, consider joining and following the TKO Strong Foundation, an American association dedicated to the fight against MVID: TKO Strong Foundation
Despite the rarity of the disease, affected parents are now getting together on a Facebook group (not created by the association). This private group allows you to exchange ideas with other parents (and even adult MVID patients). It now has almost 100 members. Don't hesitate to apply to join the group and connect with other MVID parents/patients around the world.
If you are the parent or caregiver of a patient with MVID, we encourage you to join our contact list below.
This information will be used to communicate research and clinical trial opportunities, share educational resources and help families connect with each other. Your information will never be shared for commercial purposes.
Get involved as a volunteer, fundraiser, advocate, and more... There are so many ways to help. Whether it's joining a regional group, participating in our programs, making a donation, fundraising, writing a blog post or amplifying our messages on social networks.
It's all important. It's rewarding. And it all makes a BIG difference in helping to find a cure for MVID.
