alwaysinhope.com

Always in Hope

What would you do if you had an incurable rare disease? 30,000,000 Americans do. Half of them are children. Rare disease doesn't discriminate. It could happen to you. Script src=/ fast.wistia.net/assets/external/E-v1.js async= /script " data-provider-name="Wistia, Inc.". Producer/Director Rudy Poe talks about "Always in Hope"; his passion for the subject, where the idea came from, how it's going to get made and the goals for the project.

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Always in Hope | alwaysinhope.com Reviews

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What would you do if you had an incurable rare disease? 30,000,000 Americans do. Half of them are children. Rare disease doesn't discriminate. It could happen to you. Script src=/ fast.wistia.net/assets/external/E-v1.js async= /script data-provider-name=Wistia, Inc.. Producer/Director Rudy Poe talks about Always in Hope; his passion for the subject, where the idea came from, how it's going to get made and the goals for the project.

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1 video

2 welcome

3 project overview

4 facts

5 story

6 perspective

7 relevance

8 community

9 sharing

10 created by

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Always in Hope | alwaysinhope.com Reviews

https://alwaysinhope.com

What would you do if you had an incurable rare disease? 30,000,000 Americans do. Half of them are children. Rare disease doesn't discriminate. It could happen to you. Script src=/ fast.wistia.net/assets/external/E-v1.js async= /script " data-provider-name="Wistia, Inc.". Producer/Director Rudy Poe talks about "Always in Hope"; his passion for the subject, where the idea came from, how it's going to get made and the goals for the project.

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alwaysinhope.com

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Story Submissions — Always in Hope

http://www.alwaysinhope.com/story-submissions

If you would like to submit your story we would love to have you do so. Please fill out the form so we know who you are and how we can get in touch with you. All submissions confidential. Thank you for sharing and we look forward to hearing your story. Please tell us all about your story. Do you have materials you would like to share for inclusion in the project? If have any specific materials please describe:. Would you like to be considered for filming on our production trip? So we may contact you).

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Sharing — Always in Hope

http://www.alwaysinhope.com/sharing

Always in Hope,. Will begin with production process itself. The Rare letters themselves will help drive awareness as the production team reaches out to the community to gather the letters that will tell the story. These connections will be made both in person and via the. Website and social media channels throughout the research and production phases of the project. By documenting and sharing the process itself including behind the scenes footage, interview clips and other. Will forge vital outreach part...

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Facts — Always in Hope

http://www.alwaysinhope.com/facts

One in ten Americans has or will develop a rare disease, and then encounter a 95% likelihood of zero treatment. That equates to over 30 million people in the United States alone, who have a rare disease; more than cancer and AIDS combined. Globally, if all the people with rare diseases lived in one country, it would be the world’s third most populated country behind China and India. Half of these people are children. Rudy Poe Inc., 228 22nd Street, Huntington Beach, CA, 92648, United States.

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Story — Always in Hope

http://www.alwaysinhope.com/story

Tells the story of the world’s Rare Community at a pivotal point in history. Never before has the opportunity existed to change and save the lives of so many. Rudy Poe Inc., 228 22nd Street, Huntington Beach, CA, 92648, United States.

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Video Gallery — Always in Hope

http://www.alwaysinhope.com/video-gallery-1

Rudy Poe Inc., 228 22nd Street, Huntington Beach, CA, 92648, United States.

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mynormal.ca

My Normal | storytelling for rare disease health: Resources

http://www.mynormal.ca/p/links.html

My Normal storytelling for rare disease health. Using Personal Stories for Advocacy. IDEAS: Storytelling and Health. We've also started a listly of stories. That makes it easy to find online stories and add your own to the growing list. Rare Disease Story Galleries. The galleries below are great story sources and may also be places where YOU can contribute your story:. Acid Maltase Deficiency Association (AMDA), Meet the Patients. Acromegaly.care, Patient and Caregiver Stories. FMD Chat, Patients' Stories.

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What would you do if you had an incurable rare disease? 30,000,000 Americans do. Half of them are children. Rare disease doesn't discriminate. It could happen to you. Script src=/ fast.wistia.net/assets/external/E-v1.js async= /script " data-provider-name="Wistia, Inc.". Producer/Director Rudy Poe talks about "Always in Hope"; his passion for the subject, where the idea came from, how it's going to get made and the goals for the project.

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