Head of the Herd: Rare Leadership Spotlight - National Organization for Rare Disorders

Head of the Herd: Rare Leader Spotlight

Thank you for agreeing to participate in our Head of the Herd program. This form will capture some basic information about your organization, your story, and your plans for the future. Kindly respond to any of the following questions that resonate with you.

The NORD Membership team will review your submission for a potential post to appear on the NORD website and social media. We will be back in touch with any questions and a request for your approval prior to posting.

About You

Name(Required)

First Last

Email(Required)

Link to your preferred social media

If you would like for us to share a link to your personal social media account, please list it here.

Organization(Required)

Job Title(Required)

Disease(s) advocated for(Required)

Your working location

City, State

How did you get started in this community?

Does your past work experience lend itself to your current work in rare disease?

Current Rare Disease Work

What are you hoping to accomplish this year?

How do you see your organization changing in the next five year?

How does your organization fundraise?

What lessons or do's and don'ts would you hope to impart to other leaders about running an effective organization?

How do you remain hopeful?

Please provide an example of how NORD has recently supported your organization's work and leadership (such as a scholarship, webinar, meeting, or other member resource):

Where did you learn to develop your leadership skills?

Would you be willing to share your expertise in leadership with other members?

Yes

Just for fun!

Who do you quote the most?

If you found a cure for your disease and had to find a new mission...

Last book you read:

Hobbies:

Your Photo(Required)

Max. file size: 50 MB.

Please share a photo with us that we can use at the top of your spotlight.

Terms and Conditions: In these Standard Terms and Conditions, “Your Content” shall mean any audio, video, text, images, or other material you provide or display. By providing Your Content, you grant NORD a license to use, reproduce, adapt, modify, publish, translate, and distribute it in our marketing materials and to all media. Your Content must be your own and must not invade any third‐party’s rights. When you submit content or information to NORD it means that you are allowing the public to access and use that information, and to associate it with you. NORD reserves the right to remove Your Content at any time, without notice. We take your privacy very seriously. Subject to the Terms and Conditions above, NORD will never sell or disclose your personal information.(Required)

Yes, I agree.

No, I do not agree.