Syngap1 Organization Manager
Manage information for Syngap1 organizations
📋 Organization Setup Guidance
This guide will help you prepare all the necessary information for your rare disease organization profile.
🏢 Required Information
Before creating your organization profile, please prepare the following information:
Who are we?
Write a comprehensive description of your organization including:
- When and why your organization was founded
- Your mission and what drives your work
- What makes your organization unique
- The community you serve and represent
How many patients are part of the group?
Provide the current number of patients your organization supports. This helps demonstrate:
- The scale of your impact
- The size of the community you represent
- Your organization's reach and influence
What is the organization's goal?
Clearly articulate your organization's objectives:
- Research and treatment goals
- Community support initiatives
- Awareness and advocacy efforts
- Long-term vision for the future
How can we be contacted?
Provide multiple ways for people to reach your organization:
- Official website URL
- Social media handles (Instagram, Facebook, etc.)
- Contact email address
- Any other relevant contact methods
What is the organization logo?
Prepare a high-quality digital logo file:
- PNG or JPG format recommended
- Square or rectangular orientation
- High resolution for print and web use
- Clear and recognizable design
Who are the leaders of the organization?
Identify key leadership figures:
- Primary organization leader/founder
- Board members or key volunteers
- Their roles and responsibilities
- Brief background or qualifications
✨ Example: Syngap1 Argentina
Organization Story & Goals:
Fundación Syngap Argentina was born in 2021 from the hearts of Argentine families united by a common cause: to give a voice to SYNGAP1 Syndrome. We are a group of parents who work passionately, day by day, to raise awareness about this rare disease in our country.
Currently, we support 22 patients in Argentina. Our commitment goes beyond family support; we are dedicated to collaborating closely with the medical and scientific community, as well as with other organizations, to drive research that brings us closer to a treatment and, hopefully, a cure. We want to build a better future for our children and for all individuals living with SYNGAP1.
Contact Information:
Want to learn more about us or join our mission? We'd love for you to get in touch!
- 🌐 Website: www.syngap1.com.ar
- 📱 Instagram: @syngap1.argentina
- 📧 Email: info@syngap1.argentina
Network Connection:
SYNGAP GLOBAL NETWORK
📧 info@syngapglobal.net
🚀 Ready to Start?
Once you have prepared all the required information, click the "Organizations" tab to begin creating your organization profile. The form will guide you through entering all the necessary details.
Create a social media post presenting your organization...