Welcome to La Maison 8p!
We are a group of families, French but not only, whose relatives include people affected by the rare genetic anomaly known as ‘ invdupdel8p’. Scattered and separated from each other by the kilometers, we are united by our common experience. We bring together the knowledge drawn by everyone, from our unique hospital journeys through which we have passed with
our children – our loved ones.
We share our successes as well as our failures. We share our ideas and hopes, just as we exchange on the struggles we have encountered along the way. What is important to us is to gather the data and notes that everyone meticulously collects in order to have an increasingly complete database of our loved ones affected by invdupdel8p. So that they and newly diagnosed patients can be guided as best they can in their clinical treatment and have better care of their needs by medico-social and school institutions.
If you are looking for more information on this rare genetic anomaly, you have come to the right place!
Read our stories, take our opinions into account, respect our expertise as parent-caregivers on the front line of everyday life, to accompany and help our children to flourish at their best, to face challenges day after day. We are neither doctors nor scientists, and do not pretend to be. However, we observe and educate our loved ones (and patients, because some of our members are medical specialists exposed to this genetic syndrome), more than anyone else and, when they are unable to express their wishes or frustrations with words, the bond that unites us is the only thing that allows them to be understood.
We invite you to ask us your questions, to support our efforts by becoming a member, to share this site with anyone you think may be concerned or interested in invdupdel8p, because research on this genetic disease remains very limited, and of course heard to bring your testimonies and your knowledge.
This site has an English and French version, so as to cultivate relations on an international level. invdupdel8p knows no borders, and we have 8p members and friends all over the world.
Thank you for visiting the La Maison 8p website. We wish you a good discovery of all that we have to share, all together.
The 8p family extends around the world, and here are their structures:
France
La Maison 8p is the first French association entirely dedicated to families affected by changes to the eighth chromosome.
Spain
ASDID, the first Spanish association, entirely dedicated to families affected by genetic changes to the eighth chromosome. Ongoing research project.
United Kingdom & The Republic of Ireland
Extended community of families affected by genetic changes to the eighth chromosome, of which a mother is a spokesperson and educates the general public.
Czech Republic
8p Heros CZ, the first association in the Czech Republic, entirely dedicated to families affected by genetic changes to the eighth chromosome.
United States
Project 8p, based in New York City, conducts scientific research and maintains a registry of patients with genetic changes to the eighth chromosome.
Become a member of La Maison 8p
You want to:
bring your experiences, participate in our actions and projects,
benefit from our resources and supports?
Thanks to Yapla, you can pay your annual subscription by credit card directly online and
return the signed statutes to us by e-mail.
Make a Donation
Do you want to support our efforts, without becoming a Member?
You can make a donation via Yapla, a secure online platform, with a few clicks.
Choose the amount, use your credit card; without any strings attached
you are contributing to a good cause. Thank You, very much!
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La Maison 8p invites you to take a walk on our site...
Who Are We?
Parents, various health professionals, carers of people with invdupdel8p and adult people with invdupdel8p gathered to share our experiences and more...
Our Actions
Ideas, projects, our commitments and our collaborations with other organizations. All about the actions we take.
Genetics For Dummies!
Intensive, but simplified course on the why and how of genetic changes, as explained by La Maison 8p.
Patient Journey
What to expect once you have received the genetic diagnosis of invdupdel8p, based on an accumulation of various personal experiences of our "8p" families.
Know Your Rights
Don't swim in the unknown. Learn from our successes, our mistakes, our advice and, above all, arm yourself with this information to better defend your rights and those of your loved one with invdupdel8p.
Blog, Vlog, Articles
Daily anecdotes, various documentation, inspired creations, sharing of best practices, etc. Everything that motivates us, frustrates us, worries us, brings us joy, day after day.
For Siblings
Section dedicated to brothers, sisters, cousins, friends, boyfriends and girlfriends, etc. of a person with invdupdel8p.
Scientific Research
Advance scientific research around invdupdel8p: learn here which projects we are involved in and how you can join them too.
Useful Links
The associations, causes, partners, collaborators with whom we work; sites specializing in various subjects directly and indirectly related to rearrangements of the eighth chromosome.
Contact Us!
Don't forget to find us on Facebook and YouTube to exchange with the many "8p" families! If you have a specific question, go here for our contact details.