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Global Advocacy Alliance

As a GAA Member, we agree to:

Utilize RARE Global Advocacy Alliance membership to enhance each individual organization
Share useful information and services with member organization network
Be a supportive partner to our Global Advocacy Alliance member partners
Hold our leaders accountable for being a positive and responsive conduit between our organizational leaders and Global Genes

To be completed by an active member of the Organization

Please provide the following information so we can provide you with the most timely, relevant services and programs possible, and to maintain current contact and organization information. Information marked with an asterisk is required.

Privacy Statement: This information will be held in utmost confidence and not be shared nor published without your consent.

Use of data: The data collected will be used to offer high impact, relevant programs and services, and some information will be required for grant eligibility. Information provided may be used in aggregate for periodic rare disease landscape reporting.

Organization Details:

Organization Name

1. Mission

2. Primary Contact

First Name

Last Name

Job Title

Email Address

3. Secondary Contact

First Name

Last Name

Job Title

Email Address

4. Address

Address	Address (line 2)
City State/Province Provinces	State Country Postal Code

5. Locations Served:

6. Year the Organization was established

7. Organization Annual Income/Revenue

8. How would you define your organization

9. Official Charity Number/Tax ID

10. Does your organization have a registry

YesNo

Please input your social media handles into the boxes below. For Instagram and Twitter, please only input the handles (e.g., @globalgenes). For Facebook and Website, please input the URLs.

11. Social Media Channels:

Website	Facebook
Instagram	Twitter

Tell us about your Patient Community

13. Primary Disease(s) or Genetic Condition(s) supported or represented by your organization/ community:

Please limit your response to 100 characters.

14. Specialties involved in diagnosing and treating the disease: Disease area. Please select the categories that best fit your rare disease(s)? Please select all that apply (Please use Ctrl Key to multi select)

Is there an approved treatment?

YesNo

15. Is there a commonly associated secondary condition with your disease?

16. Community Reach - members (patients and caregivers) in your community recommended

Estimated total reach of your communications list (email, Facebook, etc.)

Estimated number of people directly affected (patients) in your community

Diversity & Inclusion

17. Do you have a diversity inclusion policy in place

YesNo

If No, what do you do to ensure you are reaching those underserved?

18. Does the disease or condition have a prevelance in any of the following:

Registry Development and Management	Event Strategy & Organization
Group & Community Support	Starting a Non Profit education and connection to experts and peers
Board Development training and capacity building	Research or Drug Development education and capacity building
Diversity, Equity and Inclusion training and research funding	Mental Health content and programming
Fundraising / Grant Writing training and Capacity Building	Government, Policy, Legislation education and support
Social Media strategy and capacity building	Geographical and Linguistic Expansion

Join Today!

Global Advocacy Alliance

As a GAA Member, we agree to:

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