Global Patient Registry - PTLS HOPE Research Foundation

Welcome to the PTLS HOPE Research Foundation Global Patient Registry!

Your participation in our patient registry is invaluable to advancing Potocki Lupski Syndrome (PTLS) research. Each detail you provide holds the potential to shape the future of understanding and treating PTLS. Today, we'd like to highlight the importance of including your contact details in our registry form.

🌟 Fostering Collaboration: Your contact information allows us to connect with you for further research opportunities, such as clinical trials or studies that might directly benefit the PTLS community.

🤝 Enhancing Outreach: By providing your details, you enable us to keep you informed about the latest breakthroughs, research initiatives & news

🔒 Ensuring Privacy: Rest assured, your contact details remain confidential and are solely used for research-related communication within the PTLS HOPE Research Foundation.

👥 Community Impact: Your participation isn't just data; it's a crucial step toward collective progress. Your information contributes to a stronger, more comprehensive understanding of PTLS.

🚀 Driving Progress: With your support, we're one step closer to finding better treatments, raising awareness, and improving the quality of life for individuals affected by PTLS.

✨ Join Us in Making a Difference: Together, we're pushing boundaries and bringing hope to the PTLS community. Your contact details matter—let's create a future where PTLS is better understood and managed.

Thank you for being a vital part of our mission. Your involvement is instrumental in propelling PTLS research forward.

With gratitude,

PTLS HOPE Research Foundation - a parent led initiative

Question Title

* 1. Patient Full Name

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* 2. Patient Date of Birth (day/Month/ year)

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* 3. Patient Age

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* 4. Patient Age at Diagnosis

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* 5. Does Patient also have CMT1A diagnosis?

Yes

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* 6. Name/s of parents or legal guardians

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* 7. Contact Details

Please don't skip this step - we will need to contact you regarding research initiatives that you may want to participate in, some of these maybe relevant to the country you reside in also.

Name

Address

Address 2

City/Town

State/Province

ZIP/Postal Code

Country

Email Address

Phone Number

visit us at www.ptlshope.org for more information

Global Patient Registry - PTLS HOPE Research Foundation

Question Title

* 1. Patient Full Name

Question Title

* 2. Patient Date of Birth (day/Month/ year)

Question Title

* 3. Patient Age

Question Title

* 4. Patient Age at Diagnosis

Question Title

* 5. Does Patient also have CMT1A diagnosis?

Question Title

* 6. Name/s of parents or legal guardians

Question Title

* 7. Contact DetailsPlease don't skip this step - we will need to contact you regarding research initiatives that you may want to participate in, some of these maybe relevant to the country you reside in also.

* 7. Contact Details

Please don't skip this step - we will need to contact you regarding research initiatives that you may want to participate in, some of these maybe relevant to the country you reside in also.