EHE PAL Program Application

The EHE Foundation is excited to announce the launch of our EHE Patient Advocate Leader (PAL) Program. We are looking for a diverse group of passionate EHE supporters (anyone diagnosed with EHE or caregivers) who know or want to learn more about EHE and speak on behalf of EHE patients. An EHE PAL needs to be comfortable meeting new and current EHE community members and connecting them to resources. They also must be familiar with and have access to technology communication tools such as email, chat platforms and video conferencing.  A PAL should have good verbal and written communication skills and be willing to be a positive representative on behalf of all EHE patients and The EHE Foundation’s mission.

Please complete the below application in full and any requested follow-up. Applications are reviewed in waves and will be accepted until May 31st, 2020.

Participant Guidelines: 
  • applicants must reside in the US. If you are based outside of the US, please contact EHE Foundation for information on other ways to get involved. 
  • program will commence summer 2020 and offer participants the opportunity to participate for two years 
  • program requirements include a time commitment of on average about 5 hours a month, with a required orientation call and periodic conference calls.
  • participants will be supporting the EHE International Scientific Conference, tentatively scheduled for Nov. 21-22, 2020 in Florida.
In return, EHE PALs receive the following:
  • travel expenses paid to the EHE Scientific Conference, tentatively scheduled for November 2020 
  • valuable knowledge through educational training and access to most up-to-date EHE information and resources from around the world. 
  • join the team of a select group of patient advocates networking together to support The EHE Foundation's mission and advocate on behalf of the EHE patient community. 
  • opportunity to provide the patient voice in EHE research priorities, thus directly impacting the purpose of finding treatment and a cure for EHE. 
Interested? Please complete the following application below. You will be contacted within two weeks for follow-up. Any questions please contact Medha at mdeorassutliff@fightehe.org. 

Thank you for your commitment!
-The EHE Foundation PAL Program Committee

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* 1. Your Contact Info

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* 2. Your Connection to EHE

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* 3. Please share more about your connection to EHE and the EHE Community. Include any prior volunteer or related experience with The EHE Foundation and/or other patient advocacy organizations. 

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* 4. What qualities/skills/expertise can you bring to this program? 

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* 5. What do you think makes a good patient advocate?

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* 6. COMMITMENT: As a PAL participant, you will be committing to at least 5 hours per month over the next two years. In addition, you will be attending the EHE International Scientific Conference.

Are you able to commit to dedicating on average at least 5 hours per month to the PAL Program?

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* 7. Will you be able to attend the EHE International Scientific Conference, tentatively scheduled for November 21-22 in Boca Raton, FL?

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* 8. Do you have any accommodations that would need to be made for travel or virtual attendance to conferences?

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* 9. Anything else you would like us to know about yourself or your interest in the PAL program? 

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