The TLC Foundation for Body-Focused Repetitive Behaviors Urges NIH to Maintain Current Funding Guidelines to Protect Research on Understudied Conditions
The TLC Foundation for Body-Focused Repetitive Behaviors (BFRBs) strongly urges the National Institutes of Health (NIH) to reconsider the recent guidance outlined in NOT-OD-25-068 regarding adjustments to Research Project Grant (RPG) funding allocations. As a leading organization advocating for individuals affected by Body-Focused Repetitive Behaviors, we stress the importance of maintaining current funding guidelines to ensure critical research continues unimpeded for underrepresented and often overlooked conditions.
The newly proposed NIH guidance suggests modifications to grant funding policies that could disproportionately affect emerging and niche fields of research, including those focused on BFRBs—such as trichotillomania (hair-pulling disorder), excoriation (skin-picking) disorder, and other compulsive behaviors that impact 1 in 20 individuals worldwide. These conditions remain significantly under-researched despite their profound effects on mental health, quality of life, and social functioning.
Our community relies on continued funding for research that can drive advancements in treatment, increase public awareness, and provide much-needed support for individuals struggling with BFRBs. Any reduction in available research funding threatens to stall progress in understanding and treating these conditions, which already suffer from a lack of dedicated resources and attention. This is especially of importance when BFRBs are shown to have a larger impact on individuals under 40 years old, the nation’s youth.
The NIH has historically played a critical role in supporting research that addresses gaps in knowledge, leading to better interventions and evidence-based care. Restricting funding availability for smaller research areas like BFRBs risks exacerbating disparities in mental health research and treatment accessibility.
The TLC Foundation urges the NIH to maintain current funding levels and ensure equitable distribution of research grants so that all individuals, regardless of the rarity or public awareness of their condition, have access to the medical advancements they deserve.
We encourage the scientific and patient advocacy communities to join us in urging policymakers to protect funding for all areas of mental health research, particularly those that remain underserved.
ACT NOW - Contact your Representatives and Senators and share how proposed cuts by the National Institutes of Health (NIH) could critically set back much needed research on BFRBs, OCDs and other disorders.
In peace,
Lamia El-Sadek
Chief Executive Officer
The TLC Foundation for Body Focused Repetitive Behaviors
this is a crucial advocacy effort. as someone indirectly affected by these conditions through family, i know how sparse resources and understanding can be. the point about funding equity for smaller research fields is particularly important. sustainable, dedicated support is needed to build a proper knowledge base and develop effective interventions over the long term. Math GPT
Thank you for speaking up on this. BFRBs like trichotillomania and skin-picking disorder are exactly the kind of understudied conditions that depend on NIH support, precisely because they lack the industry funding and public visibility that larger disease areas attract. If NOT-OD-25-068 makes it harder for smaller research fields to compete for RPG funding, the people who bear the burden of that gap are the 1 in 20—many of them young—who are already struggling to find informed care. Protecting equitable funding for underserved mental health research isn't a niche concern; it's how we prevent today's overlooked conditions from staying overlooked for another generation.
I totally resonate with the call for continued funding! As someone who experienced challenges with body-focused repetitive behaviors, I've seen how important this research is. It reminds me of that ragdoll hit feeling we get when trying to shake off a habit—it's tough but essential! Thank you for raising awareness!
Thank you for speaking up on this. BFRBs affect so many people—1 in 20—yet research funding has always been an uphill battle for these conditions. It's frustrating to see policies that could make an already difficult situation worse for understudied areas of mental health. The point about impact on people under 40 really stands out; these aren't rare edge cases, they're conditions affecting our youth. I hope NIH listens and preserves equitable funding for BFRB research before progress gets set back years. Sharing this with my network and contacting my representatives.
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