Sample Scripts

Awareness Letter Writing at the Conference Blogosphere

Request a Meeting

This is an example of what you would say to request a meeting with your Member of Congress. You can also use this to invite your member of Congress to a support group meeting or special event.

My name is [INSERT NAME] and I am a constituent of [REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIAL].

[I, MY SPOUSE, CHILD, ETC] was diagnosed with a life-threatening disease, pulmonary hypertension, [NUMBER OF MONTHS/YEARS] ago.
[IF YOU ARE A SUPPORT GROUP LEADER, MENTION THAT HERE]

I would like to schedule a time to [MEET WITH NAME OF ELECTED OFFICIAL/INVITE REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIALTO OUR SUPPORT GROUP MEETING] to talk about pulmonary hypertension and what [HE/SHE] can do to help?

Sample Thank-You Email

A couple of days after your visit, follow-up with your Member of Congress after your meeting by sending a thank you note. 

Dear [REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIAL],

It was a pleasure to meet with you on [DAY OF MEETING]. I appreciate you taking so much time out of your busy schedule to talk with me.

As I mentioned in our meeting, pulmonary hypertension is a disabling and often fatal progressive condition in which blood flow between the heart and lungs is blocked or constricted. As a result, the heart must pump too hard to send oxygenated blood to the body. This may cause the heart to enlarge and fail. There are currently twelve therapies for this disease, but they are complex, expensive and have many side effects. Unfortunately, 75% of patients have advanced PH by the time they are diagnosed, and many become disabled.

I urge you to show your support for future PH legislation.

Thank you.

Sincerely,
[YOUR NAME]
[YOUR TELEPHONE NUMBER]
[YOUR E-MAIL ADDRESS]

 

Watch: PHA Advocacy Training

Watch this video to learn more about the PH bill and how to reach out to your Members of Congress about becoming a co-sponsor.

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NORD

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.