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Social Media Advisory Board

PHA Advisory Boards

The Social Media Advisory Board helps PHA to strategize, plan and gather feedback on PHA’s social media presence. The Advisory Board makes recommendations to PHA about new and existing social media programming to meet the needs of patients and their families. The Advisory Board meets quarterly.

Submit a question or comment to the Social Media Advisory Board

Social Media Advisory Board Job Description (PDF)

Kim F.

Kim F

Patient

Pulmonary hypertension has taught me to live life; I'm more appreciative of my quality of life rather than the quantity. Don't allow PH to define who you are; never give up on yourself - be empowered and inspire others.

Stacey S.

Stacey S

Caregiver

Stacey serves on PHA's social media advisory board and is authority in digital marketing, with expertise in social and mobile marketing. She has lost her mother and two aunts to PH and has a cousin currently battling the disease.

Martha G.

Martha G

Caregiver (parent)

I am the parent of a pediatric PH patient, Daniel, who was diagnosed when he was barely a year old. Our physician recommended the PHA website as a resource for all of our questions. Due to his early diagnosis and the resources we were afforded Daniel is now 9 and thriving. We could not be more grateful; we were given access to information that allowed us to make the best decisions for our family and led us to a community that understood our struggles. These tools not only empowered me as a caregiver but motivated me to become active on social media.

As the mother of a sick child, I often fear for the worst. However, being part of the PHA Social Media advisory committee is an opportunity to change my fear into action.   In the US, we are  lucky to have access to so much knowledge about PH, but in countries like my native Ecuador, PH is virtually unknown. My involvement gives me an opportunity to share our resources and knowledge with the Spanish speaking community. I am thankful to have the opportunity to contribute to the community by doing something I love: spreading PH awareness.

Perry M.

Perry M

Patient

After being diagnosed with this unknown disease, I am very grateful to have found PHA. Not only did they provide a wealth of knowledge, they introduced me to the PH community where I found hope and inspiration from so many patients, caregivers and medical professionals. After a support group was founded in my city, I had the desire to help and was soon asked to be a co-leader. With PHA's guidance, and my co-leaders' hard work, we provide education, support, advocacy and awareness to our group and community. Most of all, we give people hope.

Alex F.

Alex F

Patient

I found PHA as soon as I got home and did an "Alta Vista" look up (before google). PHA helped me so much! I went two or three times a day to PHA message boards and read everything I could. I hungered for info, like I still do today. Now, after 16 yrs, I'd like to help others who also thirst for knowledge!

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.