When Karine’s son, Olivier, was diagnosed with Prader-Willi Syndrome (PWS), she searched for something beyond medical information—she was looking for people who looked like him. She wanted to see a future for her child, one that felt familiar and hopeful.
"I was looking for an example of what his life would look like," Karine shares. "Since PWS was something I had never heard of, I had never met anyone with it. I needed to know we weren’t alone."
Creating Space for Connection and Change
That search for connection led to the creation of the PWS BIPOC Affinity Group, a vital resource for Black, Indigenous, and People of Color affected by PWS. Karine joined forces with Charles and Gennelle Conway, whose daughter Angelica has PWS, and Dini Rao, mom to Ayoni, also living with PWS, to establish this supportive network. Together, they created a space where BIPOC families could connect, share experiences, and advocate for greater representation in the rare disease community.
"In my work to undo racism in other realms, I have found that if you don't specifically think about their needs, people of color will often have the worst results." Dini shares. "This is because our systems still have the roots of institutional racism embedded in them. So if we do nothing different, people of color living with PWS will be diagnosed later, will get less medical care, less support...they may not live as long. That wasn't ok with me, and I knew I had tools to offer. One of the most effective ways to create change is to bring people of color together, to organize and let them take leadership. So, that's what we are doing with our BIPOC Affinity Group."
Representation in Research: Why It Matters
One of the most pressing issues the BIPOC community faces in the rare disease space is underrepresentation in clinical trials.
"When you look at clinical trials, how many people of color are participating? Very few," Charles Conway explains. "So when treatments are developed, are they truly effective for the whole population? How do we know?"
Without diversity in research, there are gaps in understanding how treatments work across different genetic backgrounds. Increasing BIPOC participation in clinical trials and the global registry isn’t just about fairness—it’s about ensuring better treatments for everyone.
"When there's diversity in clinical trials, it improves the product for everybody," Gennelle Conway emphasizes.
Breaking Barriers, Defying Limits
For Karine, this fight for inclusion isn’t just theoretical—it’s deeply personal. It’s about Olivier.
"The genetics reports said, ‘Oh, he may not walk, he may not talk, he may not do this or that.' And my son? He said, ‘What do you mean? For sure, I’m going to talk—and I’m going to talk all day. For sure, I’m going to walk. I’m going to run. I’m going to do all the things they said I couldn’t, and so much more,’" Karine shares.
That determination fuels this movement. BIPOC families impacted by PWS are uniting to challenge assumptions, advocate for inclusion, and work toward a future where every family has access to the best care, the most effective treatments, and the opportunity to thrive.
Olivier and Angelica's journeys with PWS highlights the urgent need for greater representation and inclusion in the rare disease community.
Join the Movement: Upcoming Listening Sessions
The PWS BIPOC Affinity Group is more than a support network—it’s a movement for change.
If you are a family who identifies as Black, Indigenous, or a Person of Color, or a caregiver of an individual who identifies as BIPOC, we want to hear from you. These sessions will help us understand your challenges, lessons, and needs, shaping our goals and action plan.
📅 Listening Session Dates:
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March 4 (Tues) at 12pm ET – Focus on ages 0-12
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March 13 (Thurs) at 7pm ET – Focus on ages 0-12
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March 20 (Thurs) at 12pm ET – Focus on ages 13+
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March 25 (Tues) at 7pm ET – Focus on ages 13+
"Join us. Help us make change. We can do it together and make the lives of our kids a whole lot better," Gennelle Conway urges.
✅ Sign up for a listening session here.
📩 To learn more, email BIPOCPWS@gmail.com
💡 Not a BIPOC family? Be an ally—share this with your community!
The PWS BIPOC Affinity Group Mission Statement: Our mission is to empower and connect Black, Indigenous, and People of Color with Prader-Willi Syndrome and their caregivers through community-driven research, education, and advocacy. By uniting diverse voices and experiences, we aim to improve health outcomes and the overall quality of life for all.
