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Learn about your Pitt-Hopkins syndrome

Online, on this website!
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Nobody with a rare condition is the same! It is important to understand how healthy you are and who you are! Our community provides questionnaires and scorecards that help you to discover how a rare condition has impacted your life, how you develop.
When you discover which aspects of a rare condition impact your life, we will provide links to fitting information to allow you to develop your personal health system. This saves you from digesting information you do not need directly, keeping your head free, to allow you to enjoy life and give you just that little bit of extra support.

Because if there is something typical for families with a care-intensive person having a rare condition, is that you will see similarities with others having a rare condition, but that you will also see where you are special. Finding your friend that really matches your lifestyle, has dealt with the same challenges can be improved by finding these people with a rare condition that have approximately provided the same answers to our questionnaires and have similar scorecards.



Our vision

SHARING and IMPROVING

We, as familymembers, can help to make a differce by sharing our experiences and knowledge.

    Every person is unique!
    The value of a smile!
    The power of Love!

About the website contents

 

All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: info@cdlsWorld.org