--- title: In Conversation with the “So What?” and “What’s Next?” of Public Health Praxis in Rare Disease Research and Advocacy description: (RDDC) Fellowship has been a transformative, nurturing, and inspiring experience that I am deeply grateful for being a part of. By Siwaar Abouhala, BA --- [Skip to main content](https://www.rarediseasediversity.org/blog/in-conversation-with-the-so-what-and-whats-next-of-public-health-praxis-in-rare-disease-research-and-advocacy#main) [![RDDC logo TM](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM Sticky](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM mobile](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM mobile sticky](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ](https://www.rarediseasediversity.org) - [Show submenu for About the Coalition About the Coalition ](https://www.rarediseasediversity.org/about) - [Our Team](https://www.rarediseasediversity.org/rddc-team) - [Advisory Council](https://www.rarediseasediversity.org/rddc-advisory-council) - [Industry Alliance](https://www.rarediseasediversity.org/industry-alliance) - [Partners](https://www.rarediseasediversity.org/rddc-partners) - [Show submenu for What We Do What We Do ](https://www.rarediseasediversity.org/what-we-do) - [Working Groups](https://www.rarediseasediversity.org/what-we-do) - [Policy In Action](https://www.rarediseasediversity.org/policy-in-action) - [Get Involved](https://www.rarediseasediversity.org/rddc-get-involved) - [Show submenu for Patient Support Patient Support ](https://www.rarediseasediversity.org/additional-patient-support) - [Breaking Barriers: Genetic Testing](https://www.rarediseasediversity.org/breaking-barriers) - [Patient Stories](https://www.rarediseasediversity.org/rddc-patient-stories) - [Show submenu for The Latest The Latest ](https://www.rarediseasediversity.org/the-latest) - [Opportunities](https://www.rarediseasediversity.org/rddc-opportunities) - [News & Announcements](https://www.rarediseasediversity.org/blog) - [Resources & Research](https://www.rarediseasediversity.org/research-resources) - [Events](https://www.rarediseasediversity.org/rddc-events) Open main navigation Close main navigation - Show submenu for About the Coalition About the Coalition - About the Coalition - [About the Coalition](https://www.rarediseasediversity.org/about) - [Our Team](https://www.rarediseasediversity.org/rddc-team) - [Advisory Council](https://www.rarediseasediversity.org/rddc-advisory-council) - [Industry Alliance](https://www.rarediseasediversity.org/industry-alliance) - [Partners](https://www.rarediseasediversity.org/rddc-partners) - Show submenu for What We Do What We Do - What We Do - [What We Do](https://www.rarediseasediversity.org/what-we-do) - [Working Groups](https://www.rarediseasediversity.org/what-we-do) - [Policy In Action](https://www.rarediseasediversity.org/policy-in-action) - [Get Involved](https://www.rarediseasediversity.org/rddc-get-involved) - Show submenu for Patient Support Patient Support - Patient Support - [Patient Support](https://www.rarediseasediversity.org/additional-patient-support) - [Breaking Barriers: Genetic Testing](https://www.rarediseasediversity.org/breaking-barriers) - [Patient Stories](https://www.rarediseasediversity.org/rddc-patient-stories) - Show submenu for The Latest The Latest - The Latest - [The Latest](https://www.rarediseasediversity.org/the-latest) - [Opportunities](https://www.rarediseasediversity.org/rddc-opportunities) - [News & Announcements](https://www.rarediseasediversity.org/blog) - [Resources & Research](https://www.rarediseasediversity.org/research-resources) - [Events](https://www.rarediseasediversity.org/rddc-events) - Search - [Donate](https://www.rarediseasediversity.org/blog/?campaign=677445) [Donate](https://www.rarediseasediversity.org/blog/?campaign=677445) Search [Categories](https://www.rarediseasediversity.org/blog/in-conversation-with-the-so-what-and-whats-next-of-public-health-praxis-in-rare-disease-research-and-advocacy#) - [RDDC News & Announcements](https://www.rarediseasediversity.org/blog/tag/rddc-news-announcements) - [RDDC Reflections](https://www.rarediseasediversity.org/blog/tag/rddc-reflections) - [Fellows](https://www.rarediseasediversity.org/blog/tag/fellows) - [RDDC Events](https://www.rarediseasediversity.org/blog/tag/rddc-events) - [RDDC in the News](https://www.rarediseasediversity.org/blog/tag/rddc-in-the-news) # In Conversation with the “So What?” and “What’s Next?” of Public Health Praxis in Rare Disease Research and Advocacy # In Conversation with the “So What?” and “What’s Next?” of Public Health Praxis in Rare Disease Research and Advocacy July 14, 2025 The Rare Disease Diversity Coalition (RDDC) Fellowship has been a transformative, nurturing, and inspiring experience that I am deeply grateful for being a part of. As I conclude my work in the weeks and months to come, I have been reflecting on my overall journey with RDDC – from working with a community organization to co-developing an anti-discrimination curriculum to now envisioning next steps for this essential advocacy. In this blog post, I hope to share overall reflections with you all, as well as begin to answer the “So what?” and “What’s next?” of public health praxis that we often ask – both of ourselves and others – particularly in the rare disease space.  As the 2025 RDDC Fellow, I have been serving as a research consultant with American Muslim Health Professionals (AMHP) to co-construct a curriculum for providers to learn about faith-based values and cultural humility practices to better serve their Muslim patients living with rare disease in the United States. From mental health to nutrition to substance misuse, our topics of interest have encompassed diverse lived experiences to reflect patient experiences across cultural, racial, ethnic, and gender identities, as well as across physical, cognitive, and learning abilities. Additionally, we have centered themes and takeaways that can be applicable to many types of minoritized patients, such as cultural taboos, internalized shame, and identity struggles. As we finalize this curriculum, we hope to share it with the public and to provide support by utilizing it through a hybrid symposium in the next couple of months, with an in-person option in Boston, MA and an online feature via Zoom. We hope to publicize these logistical details soon with the RDDC community and other allies as they are further polished.  In addition to sharing our work with community members through this blog series and a hybrid event, we also will be presenting this work at the 2025 American Public Health Association (APHA) Conference in Washington, DC. this November. Specifically, we are honored to speak at a roundtable session hosted by the Caucus on Public Health and the Faith Community. By describing this work to academic researchers and allied health professionals, we hope to inspire providers to implement our teachings and practices in their work with minoritized patient communities. For instance, a subspecialist in the audience may benefit from our nutrition scenario, which discusses the intersection of medication adherence, disordered eating, and body image concerns. On the other hand, an attendee focused on mental health may learn further from our substance misuse scenario, which unpacks the guilt and hopelessness that minoritized patients may face. In these combined ways, our varied presentation methods will ensure that patients, allies, researchers, providers, and community members are informed about this work and are given opportunities to offer constructive feedback. Beyond this curriculum and dissemination plan, it is important to identify and return to the purpose of this overall endeavor. In my personal life, I have recently moved across the country to begin medical school at Stanford University and to conduct research with the Leadership in Health Disparities Program (LHDP). Amid all of these changes, I find myself reflecting on my personal calling and the values I hope to uphold in my future clinical practice and public health programming. While the glitz and glam of prestigious accolades can be alluring – and oftentimes are truly motivating – I realize, time and time again, that it is the people who call me to medicine, not the other way around. Hopeful immigrant and displaced families. Loving mothers, birthing people, and babies. Proud community health workers and advocates. I love the research that I do, but even more so I love the sacred times when I can give back data and resources to the communities who entrust us with their health. With this value set in mind, I am honored to have served as your 2025 RDDC Fellow, and I will take all that I have learned into this next exciting and timely chapter of life. ###### Tags: [RDDC News & Announcements](https://www.rarediseasediversity.org/blog/tag/rddc-news-announcements) Post by [Siwaar Abouhala, BA](https://www.rarediseasediversity.org/blog/author/siwaar-abouhala-ba-1) July 14, 2025 ## Our Partners [![The Aarskog Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/The-Aarskog-Foundation.png?width=150&height=80&name=The-Aarskog-Foundation.png) ](https://www.aarskogsyndromefoundation.co.uk) [![association-of-black-cardiologists](https://www.rarediseasediversity.org/hs-fs/hubfs/association-of-black-cardiologists.png?width=150&height=80&name=association-of-black-cardiologists.png) ](https://abcardio.org) [![abcuro logo: Click to visit their web site](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/abcuro.png?width=150&height=80&name=abcuro.png) 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