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- inetnum : 18.164.0.0 - 18.165.255.255
- name : AMAZON-CF
- handle : NET-18-164-0-0-1
- status : Reallocated
- created : 1995-01-23
- changed : 2022-09-30
Owner
- organization : Amazon.com, Inc.
- handle : AMAZON-4
- address : Array,SEATTLE,WA,98101-1244,US
Abuse
- handle : AEA8-ARIN
- name : Amazon EC2 Abuse
- phone : +1-206-555-0000
- email : [email protected]
Technical support
- handle : ANO24-ARIN
- name : Amazon EC2 Network Operations
- phone : +1-206-555-0000
- email : [email protected]
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Host Informations
- IP address: 18.165.98.14
- Location: United States
- Latitude: 37.751
- Longitude: -97.822
- Timezone: America/Chicago
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Websites Listing
We found Websites Listing below when search with purasyndrome.networkforgood.com on Search Engine
Network for Good - Donate to the PURA Syndrome …
Email. Phone. Donate Once. Share: PURA Syndrome Foundation: Together We Are Family What a difference a diagnosis makes! For the family of Charlie, they had 10 years of questions. They waited 10 years to understand why their son …
Purasyndrome.networkforgood.comPURA SYNDROME FOUNDATION - Michelle Knorr's fundraiser
Help me help families impacted by PURA Syndrome Email. Hi all, World Rare Disease Day is coming up on February 28th, 2022. World Rare Disease Day brings awareness to the more than 300 million individuals diagnosed with a rare disease worldwide. HERE, YOU CAN WRITE YOUR OWN STORY TO RAISE AWARENESS FOR PURA SYNDROME . I have joined forces with …
Purasyndrome.networkforgood.comPURA SYNDROME FOUNDATION - Jessica Simmons's fundraiser
Help me help families impacted by PURA Syndrome Email. Hi all, World Rare Disease Day is coming up on February 28th, 2022. World Rare Disease Day brings awareness to the more than 300 million individuals diagnosed with a rare disease worldwide. HERE, YOU CAN WRITE YOUR OWN STORY TO RAISE AWARENESS FOR PURA SYNDROME . I have joined forces with …
Purasyndrome.networkforgood.comPURA SYNDROME FOUNDATION - PURA Syndrome Awareness 2021
Currency is in USD The PURA Syndrome Foundation relies heavily on the support of individual and corporate donations to accomplish its mission. A donation can be sent through any of the following channels: Venmo: (@PURA-Syndrome) PayPal: PURA Syndrome Checks mailed ... Log In; PURA Syndrome Awareness Month. Currency is in USD . $6,235 raised $30,000 goal …
Purasyndrome.networkforgood.comPURA syndrome - PURA gene
The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating …
Purasyndrome.orgPURA syndrome
PURA syndrome is a rare genetic disorder. The PURA gene is located on the long arm of chromosome 5 (at position 5q31.2). PURA syndrome occurs when one of a person’s two copies of the PURA gene does not function normally. …
Purasyndrome.orgPURA Syndrome Foundation Board Governance
The PURA Syndrome Foundation is a globally focused charitable organisation, registered in the USA as a 501(c)(3) tax-exempt non-profit corporation. The Foundation supports and educates patients and their families, providing a global community. Governed by volunteer international board members, the Foundation provides the global community with a place to belong. For …
Purasyndrome.orgPURA Syndrome Patients
The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating …
Purasyndrome.orgPURA Syndrome Foundation - Home - Facebook
PURA Syndrome Foundation. 1,593 likes · 1 talking about this. The PURA Syndrome Foundation is a global non-profit organisation. Our mission is to serve, educate and fund research
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Purasyndrome.networkforgood.comJoin | purasyndrome
Fill out the form below to receive email updates regarding PURA Syndrome and the PURA Syndrome Foundation. The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , …
Purasyndrome.orgFor the 3rd year, the PURA... - PURA Syndrome Foundation ...
If you are a interested in attending the PURA Syndrome Conference in... 2022, please take a moment to complete this survey. The conference will be held virtually and dates will be announced soon! We will have many sessions similar to years past want to get feedback from parents, caregivers, therapists, and clinicians on sessions that would be most helpful.
Facebook.comJoin the PURA Syndrome... - PURA Syndrome Foundation ...
If you are a interested in attending the PURA Syndrome Conference in... 2022, please take a moment to complete this survey. The conference will be held virtually and dates will be announced soon! We will have many sessions similar to years past want to get feedback from parents, caregivers, therapists, and clinicians on sessions that would be most helpful.
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Email. Password. Remember me. Log In. Forgot your password? Sign up. Admins: Access Admin Account Log In. Powered by ...
Purasyndrome.networkforgood.comPURA syndrome | Genetic and Rare Diseases Information ...
2018-01-19 · PURA syndrome is a neurodevelopmental disorder characterized by mild to moderate developmental delay, moderate to severe intellectual disability, seizures and seizure-like movements, low muscle tone (hypotonia), feeding difficulties, and breathing problems.Additional signs and symptoms may include autism; excessive drowsiness; difficulty …
Rarediseases.info.nih.govPrivacy Policy | purasyndrome
2019-10-08 · The Foundation uses Network for Good to process our donations. When you make a donation via Network for Good we collect certain information to enable us to process the transaction. This information includes your name, address, email address and credit/debit card details, reason for donation (if provided) and amount of donations made. When making a …
Purasyndrome.orgThis morning, we sent out an... - PURA Syndrome Foundation ...
If you are a interested in attending the PURA Syndrome Conference in... 2022, please take a moment to complete this survey. The conference will be held virtually and dates will be announced soon! We will have many sessions similar to years past want to get feedback from parents, caregivers, therapists, and clinicians on sessions that would be most helpful.
Facebook.comBlog from the PURA Syndrome Foundation board members ...
Updates and information from the PURA Syndrome Foundation Board members.
Purasyndrome.org#ShareYourRare today for... - PURA Syndrome Foundation ...
Email or phone: Password: Forgot account? Sign Up. See more of PURA Syndrome Foundation on Facebook. Log In. or. Create new account . See more of PURA Syndrome Foundation on Facebook. Log In. Forgot account? or. Create new account. Not now. Pages Liked by This Page. Rare Disease Day. EURORDIS - European Rare Diseases Organisation. Recent Post by …
Facebook.comDid you know the PURA Syndrome... - PURA Syndrome ...
If you are a interested in attending the PURA Syndrome Conference in... 2022, please take a moment to complete this survey. The conference will be held virtually and dates will be announced soon! We will have many sessions similar to years past want to get feedback from parents, caregivers, therapists, and clinicians on sessions that would be most helpful.
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