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 OFFICIAL TO OUR SUPPORT GROUP MEETING] to talk about pulmonary hypertension and the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073/S. 1453) 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. This sample note is written for an elected official who has not co-sponsored the Act, but you can adapt it accordingly.

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.

The
Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073/S. 1453) establishes a forum for leading experts at various healthcare agencies currently working to address PH to collaborate with one another. This approach will leverage existing federal resources to more effectively and efficiently advance medical research and improve care for PH patients. By facilitating coordinated, results-based efforts focused on this issue, we can lengthen and improve life for PH patients while potentially reducing associated federal healthcare and disability expenses.

I urge you to show your support of the PH Research and Diagnosis Act by co-sponsoring it.

Thank you.

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

Follow-up Call

A few weeks after your visit, you may want to place a follow-up phone call if your Member of Congress still has not co-sponsored the Pulmonary Hypertension Research and Diagnosis Act.

My name is [INSERT NAME] and I am calling to follow-up after my meeting with [REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIAL]. We met on [DATE OF YOUR MEETING].

I just wanted to thank [REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIAL] once again for [HIS/HER] time and remind [HIM/HER] of the importance of the
Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073/S. 1453).

Has [NAME OF ELECTED OFFICIAL] decided whether [HE/SHE] will support the PH community? I'd like to let other members of the PH community know.

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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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.