🔬 Researcher Access & Partnership

LetsTalkPPCM welcomes qualified researchers, clinicians, and academic institutions who are dedicated to understanding, studying, and supporting awareness for Peripartum Cardiomyopathy (PPCM). Our community is made up of survivors, caregivers, and advocates, many of whom are open to sharing their experiences to contribute to life-saving research and education.

📌 Requirements for Researcher Access

To protect the privacy, integrity, and well-being of our members, all researchers must:

✅ Provide detailed information about:

Institution or organization you are affiliated with
Research project details, goals, and expected outcomes
Names and roles of all individuals on your research team
Funding sources (if applicable)
Intended use of any data, quotes, or stories collected

✅ Agree to our confidentiality and ethical guidelines

✅ Pay an annual access fee of $125 — 100% of this fee goes toward PPCM awareness efforts, patient education, and community support services.

📧 You may be contacted to sign a Researcher Agreement outlining expectations and responsible use of community access.

👥 What Researchers Can Expect

Access to private PPCM support groups (observation only unless otherwise permitted)
Opportunities to connect with survivors for interviews or focus groups (pending consent)
Invitations to submit questions for community surveys
Insight into lived experiences of PPCM patients and caregivers

💡 Why We Charge a Fee

LetsTalkPPCM is a survivor-led nonprofit organization that operates with limited funding. The annual researcher access fee helps:

Maintain a safe and private space for survivors
Fund educational resources and outreach campaigns
Offer support to moms living with or at risk for PPCM

Your contribution directly supports the mission to save more lives through education and advocacy.

Questions?

Email us at admins@letstalkppcm.org] or visit our [Contact Page] for more information.

Together, we can help advance research while honoring and protecting the voices of PPCM survivors.

Fill Out Form Below:

Do not submit payment until form is completed down below. Thank you so much!

Gain Access

📥 Apply for Researcher Access

Join Our Research

Please complete the form or email us directly at admins@letstalkppcm.org with the following:

Your Institutional Affiliation – Please let us know which organization, university, or medical institution you are conducting this research through.
Research Team – Who else is involved in the project? A brief summary of your team’s background and roles would be helpful.
Research Purpose & Goals – What is the focus of your study, and how do you plan to utilize the information collected?
Funding Details – Is this research supported by any grants, institutions, or organizations?
Intended Use – Will any group member stories, quotes, or data be used in presentations, publications, or reports?

🔬Registry For PPCM Heart Moms

PPCM is known as rare, so each participant is crucial. Researchers need to better understand the stories of survivors to successfully develop testing and treatments.

Your story matters. Every experience, every challenge, and every triumph you've faced with PPCM is a powerful piece of the puzzle that can help save lives.

We invite you to take a few moments to participate in our research survey. By sharing your PPCM journey, you’re not just filling out answers—you’re giving hope, helping us advocate for better care, and shaping a future where no mother’s heart health is overlooked.

You are the voice behind the change we all want to see.

Let’s make sure the world hears it.

PPCM-R has four main goals:

1. To create a database of PPCM survivor medical records driven by patients, with voluntary patient-mediated registration, survey questionnaires, and medical record collection

2. To answer important research questions and ultimately prevent PPCM

3. To be the source reliable information about PPCM, interpreted by experts

4. To be a partner for PPCM advocacy groups in education and research initiatives

Peripartum Cardiomyopathy Awareness Week is (May 10-17) in Texas. ❤

Visit the Registry Site:

It doesn't matter how long you have been a survivor of PPCM. This registry is for ALL PPCM moms (only).

Visit Registry