Hidden Heroes Society
Advocacy
For diseases where today’s treatments still aren’t enough.
Millions of patients and families are living with serious diseases that medicine still cannot adequately stop, reverse, or cure. Hidden Heroes Society highlights advocacy efforts aimed at accelerating research, developing better treatments, improving access to clinical trials and care, and moving science toward meaningful breakthroughs.
How HHS Chooses Advocacy Causes
Why These Diseases?
HHS highlights diseases that cause substantial disability, progression, or mortality and for which existing treatments remain inadequate. Some are common and some are less common, but all represent areas where patients and families are still waiting for major therapeutic breakthroughs.
Serious Impact
Diseases that cause significant disability, loss of function, progression, or mortality.
Limited Treatment Progress
Conditions where available therapies do not adequately stop or reverse the underlying disease.
Need for Breakthroughs
Areas where research, clinical trials, treatment development, access, and funding remain critically important.
Featured Action
Reauthorize ACT for ALS
Help protect expanded-access programs, ALS research, and treatment-development efforts by supporting uninterrupted reauthorization of ACT for ALS.
Led by The ALS Association · Last reviewed September 2026What Can Students Do?
Learn
Understand the disease and why better treatments are needed.
Share
Help others understand the human impact through reliable information and patient stories.
Speak Up
Contact elected officials about research funding or relevant health policy.
Participate
Join HHS advocacy campaigns, educational programs, and awareness efforts.
Students should advocate respectfully, factually, and on a nonpartisan basis.
Message Templates
Write to Your Representatives
Use these sample messages as a starting point, then add your own voice and personal connection.
Support Medical Research
Tip: Add one or two sentences explaining why this issue matters to you.
Support Rare Disease Research
Tip: Add one or two sentences explaining why this issue matters to you.
Support Caregivers
Tip: Add one or two sentences explaining why this issue matters to you.
Improve Access to Clinical Trials
Tip: Add one or two sentences explaining why this issue matters to you.
You Don’t Have to Be an Expert to Advocate
Learn
Understand the issue and use trusted sources.
Personalize
Explain why the issue matters to you, your family, or your community.
Act
Email, call, write, join an established campaign, or help raise awareness.
Ways to Get Involved
What We Advocate For
Fund Breakthrough Research
Support NIH, NCI, FDA, DoD, and other scientifically rigorous research programs aimed at understanding disease and developing better treatments.
Accelerate Treatment Development
Support modern clinical trials, biomarkers, innovative endpoints, precision medicine, and scientifically appropriate regulatory pathways.
Expand Clinical Trial Access
Help patients find and participate in research and reduce unnecessary barriers to clinical trials.
Put Patients at the Center
Support patient experience, quality of life, meaningful function, and patient priorities in drug development and regulatory decisions.
Improve Access to Promising Treatments
Support appropriate access to approved treatments, specialist care, clinical trials, and scientifically and ethically appropriate expanded-access therapies.
Featured HHS Advocacy Causes
Diseases That Need Better Answers
Learn why action is needed and connect directly with trusted organizations leading current advocacy and research engagement.
ALS
ALS is a progressive and ultimately fatal neurodegenerative disease. Existing treatments provide limited benefit, and patients urgently need therapies that can meaningfully slow, stop, or reverse disease progression.
Why Action Is Needed
- ACT for ALS implementationnALS research fundingnExpanded access to experimental therapiesnFaster clinical development
Continued funding, implementation, access to promising therapies, innovative trials, and research remain urgent priorities.
Primary organization: The ALS Association
Learn About ACT for ALSLast reviewed: September 2026
Alzheimer’s Disease
Alzheimer’s progressively affects memory, thinking, independence, and ultimately many aspects of health. Recent treatments represent important progress, but current therapies still do not stop or cure the disease.
Why Action Is Needed
- Increased research fundingnEarlier detection and diagnosisnBetter disease-modifying therapiesnClinical trial participation
Advance research, earlier diagnosis, access to treatment, clinical trials, and support for patients and caregivers.
Primary organization: Alzheimer’s Association / Alzheimer’s Impact Movement
Last reviewed: September 2026
Parkinson’s Disease
Parkinson’s is a progressive neurodegenerative disease affecting movement and many other aspects of health. Current treatments can help manage symptoms, but they do not reliably stop the underlying disease from progressing.
Why Action Is Needed
- Disease-modifying researchnFederal research fundingnClinical trialsnBiomarkers and early diagnosis
Support research, environmental risk studies, specialized care, and policies that accelerate better treatments.
Primary organization: Parkinson’s Foundation
Last reviewed: September 2026
Glioblastoma
Glioblastoma is one of the most aggressive forms of brain cancer. Despite surgery, radiation, chemotherapy, and newer approaches, long-term outcomes remain poor and major treatment breakthroughs are urgently needed.
Why Action Is Needed
- Brain tumor research fundingnNew treatment approachesnClinical trial accessnDrug development and biomarkers
Advance pediatric and adult brain-tumor research, treatment development, and access to clinical trials.
Primary organization: National Brain Tumor Society
Last reviewed: September 2026
Pancreatic Cancer
Pancreatic cancer remains one of the deadliest major cancers. Better methods for early detection, more effective treatments, and increased research investment remain urgently needed.
Why Action Is Needed
- Early detectionnResearch fundingnNew therapiesnClinical trials and precision medicine
Increase federal cancer research investment and accelerate earlier detection and more effective treatments.
Primary organization: Pancreatic Cancer Action Network (PanCAN)
Last reviewed: September 2026
Advanced & Metastatic Cancers With Limited Treatment Options
Some cancers become difficult to control once they have spread, recurred, or developed resistance to available therapies. HHS highlights advocacy efforts aimed at expanding research and treatment options for patients facing advanced and treatment-resistant cancers.
Why Action Is Needed
- New therapies and precision oncologynDrug-resistance researchnClinical trials and expanded accessnFederal cancer research funding
Support scientifically rigorous research and broader treatment options without implying that every metastatic cancer is uniformly untreatable.
Primary organization: American Cancer Society Cancer Action Network
Last reviewed: September 2026
Huntington’s Disease
Huntington’s disease is an inherited progressive neurological disease affecting movement, cognition, behavior, and independence. There is currently no therapy that can reliably stop the underlying disease.
Why Action Is Needed
- Disease-modifying treatmentsnGenetic researchnClinical trialsnAccess to specialized care
Advance research funding, clinical trials, specialized care, and support for affected families.
Primary organization: Huntington’s Disease Society of America
Last reviewed: September 2026
Frontotemporal Dementia (FTD)
FTD is a progressive neurodegenerative disease that can profoundly affect behavior, language, movement, judgment, and independence. Effective disease-modifying treatments remain urgently needed.
Why Action Is Needed
- Research fundingnEarlier diagnosisnBiomarker and genetic researchnClinical trials
Advance diagnosis, research, trials, and resources for patients and caregivers.
Primary organization: The Association for Frontotemporal Degeneration
Last reviewed: September 2026
Multiple System Atrophy (MSA)
MSA is a rapidly progressive neurodegenerative disease affecting movement, balance, blood pressure, and other autonomic functions. Current therapies primarily manage symptoms rather than stop the disease.
Why Action Is Needed
- Disease-modifying researchnBiomarkersnEarlier diagnosisnClinical trials and awareness
Support research engagement, earlier diagnosis, biomarkers, trials, funding, and awareness.
Primary organization: Mission MSA
Last reviewed: September 2026
Progressive Supranuclear Palsy (PSP)
PSP is a progressive neurological disease that can affect balance, movement, vision, speech, swallowing, cognition, and independence. Current treatments remain largely supportive.
Why Action Is Needed
- Disease-modifying researchnBetter diagnostic toolsnBiomarkersnClinical trials and awareness
Support research, diagnosis, biomarkers, clinical trials, funding, and patient awareness.
Primary organization: CurePSP
Last reviewed: September 2026
Pulmonary Fibrosis
Pulmonary fibrosis causes progressive scarring of the lungs and can lead to severe loss of respiratory function. Existing antifibrotic treatments can slow progression for some patients but do not reverse established fibrosis or cure the disease.
Why Action Is Needed
- Research fundingnEarlier diagnosis and biomarkersnNew antifibrotic and regenerative therapiesnClinical trial and transplant access
Advance research, earlier diagnosis, new therapies, clinical-trial access, and lung-transplant awareness.
Primary organization: Pulmonary Fibrosis Foundation
Last reviewed: September 2026
Current Legislation & Action Alerts
Current Actions
Only current advocacy campaigns maintained by established organizations are shown here. External links open the organization’s official action center.
Parkinson’s Advocacy Action Center
Support current policy priorities for Parkinson’s research, care, and the people and families affected.
- Organization
- Parkinson’s Foundation
- What is being requested
- Use the current action center to contact policymakers about active Parkinson’s priorities.
- Why it matters
- Patients and families need stronger research, treatment development, and access.
Date added: September 2026 · Last reviewed: September 2026
Alzheimer’s and Dementia Advocacy
Support current public-policy efforts advancing Alzheimer’s and dementia research, detection, care, and support.
- Organization
- Alzheimer’s Impact Movement
- What is being requested
- Use the current action center to support research, care, detection, and access priorities.
- Why it matters
- Patients and families need stronger research, treatment development, and access.
Date added: September 2026 · Last reviewed: August 2026
Brain Tumor Advocacy
Support current efforts to advance brain-tumor research and improve options for patients.
- Organization
- National Brain Tumor Society
- What is being requested
- Use the organization’s current advocacy center for verified active opportunities.
- Why it matters
- Patients and families need stronger research, treatment development, and access.
Date added: September 2026 · Last reviewed: September 2026
Pancreatic Cancer Advocacy
Support current efforts for pancreatic-cancer research, early detection, and better treatment.
- Organization
- Pancreatic Cancer Action Network
- What is being requested
- Use PanCAN’s current advocacy center for active federal research and policy priorities.
- Why it matters
- Patients and families need stronger research, treatment development, and access.
Date added: September 2026 · Last reviewed: September 2026
Your Voice Matters
You Can Help Bring Attention to Urgent Needs
You do not need to be a scientist or policy expert to advocate. Learning about an issue, sharing why it matters, and contacting elected officials can help bring attention to diseases that urgently need better treatments.
Advocacy With a Focus. Service Without Boundaries.
HHS focuses its educational and advocacy efforts particularly on serious diseases where better treatments are urgently needed. Our service programs remain broader and support patients, caregivers, seniors, families, and healthcare organizations throughout the community.
Explore HHS Service ProgramsSuggest an Advocacy Cause
Is There a Health Cause HHS Should Review?
Share a trusted organization or current advocacy effort with the HHS team.
Hidden Heroes Society is a nonpartisan 501(c)(3) nonprofit organization. HHS does not endorse or oppose political candidates or political parties. Advocacy resources are provided for educational purposes and to help individuals learn about and participate in health-related public policy. External advocacy campaigns are managed by the organizations linked on this page.