What We Do (Our Campaign for Change)

We are hoping to help in many different ways such as: Changing UK clinical guidelines, lobbying the Department of Health, and advocating for better NHS pathways.

How are are fighting to get SFN recognised properly by neurologists, our specific policy goals and change how care is funded in the UK.

Aims	Community Benefit
Policy Campaigning & Systemic Advocacy: Engaging with health policymakers, NHS bodies, and government structures to secure formal recognition and standardized, accessible, free care pathways for Small Fiber Neuropathy (SFN). These currently do not exist and the need is dire. Lobbying medical governance and specialized NHS commissioning bodies to include autoimmune-mediated Small Fiber Neuropathy (SFN) on the approved indication list for publicly funded IVIG therapy. Highlighting established clinical research and cross-referencing guidelines that mandate IVIG for overlapping conditions like Sjögren’s nerve damage yet there is no pathway to allow this to happen. Standardising other immontherapies for suspected autoimmune SFN such as Rituximab.	The community will benefit massively by having empathetic, caring, knowledgeable medical practitioners who will help them. Most of them do not have this at this time. It will benefit them by achieving greater structural visibility within the healthcare system, leading to better statutory support, reduced systemic medical neglect, and more equitable institutional funding. In turn, as this is a progressive disease that kills your nerves if left untreated, which in turn leaves the patient in agony, destroys the functionality of their organis, and causes further disability including wheelchair use at times – this will help to avoid terrible health outcomes and poor life quality and help avoid immense suffering. The community will benefit by overcoming systemic funding barriers, granting very ill and disabled patients equitable, cost-free access to life-altering, first-line immunomodulatory treatments.
Research Advocacy & Drug Development Engagement: Lobbying for targeted research funding and actively engaging with pharmaceutical and clinical bodies to bring new and improved disease-modifying treatments. This includes novel treatments which have a record of massively reducing or in some cases totally stopping severe small nerve fiber pain —such as ARA-290—into mainstream medical practice.	The community will benefit by gaining access to accelerating clinical research, novel disease-modifying therapies and treatments that actually help them live without agony and live a normal life. More successful treatments and forms of pain medicine (most current pain medicines to not work at all) means much better outcomes for patients. This in turn helps to standardized diagnostic processes that are accessible and free. It also helps stop people from using dangerous substances out of desperation if we turn it into safe medicines
Access & Equity Campaigning: Campaigning aggressively for equitable, access, especially free access to life-altering and disease-modifying medicines, diagnostic treatments, and comprehensive supportive care within the public healthcare framework. Also work needs to be done to make the private sector more accessible and better as well as it still is not easy even for private patients to be recognised and treated. It is a healthcare emergency that needs public understanding, awareness raising and support.	The community will benefit by gaining access to accelerating clinical research, novel disease-modifying therapies and treatments that actually help them live without agony and live a normal life. More successful treatments and forms of pain medicine (most current pain medicines to not work at all) means much better outcomes for patients. This in turn helps to standardized diagnostic processes that are accessible and free. It also helps stop people from using dangerous substances out of desperation if we turn it into safe medicines
Strategic Cross-Sector Partnerships: Forming collaborative partnerships and joint campaigns with relevant parallel organizations (such as Long COVID, MCAS, PoTS, and hypermobility charities). This is to help influence all of the other sections mentioned here.	The community will benefit by uniting marginalized, chronically ill, and disabled patient groups to build a stronger, amplified collective voice capable of driving systemic change in healthcare access.
Access & Equity Campaigning: Campaigning aggressively for equitable, free access to life-altering and disease-modifying medicines, diagnostic treatments, and comprehensive supportive care within the public healthcare framework. Also work needs to be done to make the private sector more accessible and better as well as it still is not easy even for private patients to be recognised and treated. Most people are left to degrade in agony and are gaslit and told it is anxiety, the current situation is completely inhumane and it needs to change drastically and fast. It is a healthcare emergency that needs public understanding, awareness raising and support.	The community will benefit by alleviating the severe physical, psychological, and financial burdens of SFN, ensuring patients are not left untreated due to financial barriers or systemic gatekeeping.
Diagnostic Expansion & Lab Engagement: Pressuring NHS immunology centers, pathology laboratories, and diagnostic facilities to expand their standard testing criteria to include dedicated SFN blood panels, comprehensive autoantibody profiles, and novel serological markers.	The community will benefit by establishing objective, undeniable medical proof of an autoimmune etiology, allowing patients to bypass clinical inertia and qualify rapidly for targeted treatments. The community will benefit by alleviating the severe physical, psychological, and financial burdens of SFN, ensuring patients are not left untreated due to financial barriers or systemic gatekeeping.
Developing Acute “Crisis Pathways”: Designing and lobbying for a standardized, fast-track emergency clinical pathway within NHS trusts for patients experiencing sudden-onset, severe, or agonizing SFN flares.	The community will benefit by receiving swift, coordinated medical interventions instead of facing lengthy diagnostic delays, unnecessary emergency department backlogs, or secondary psychological trauma from medical dismissal.
Early Symptoms Emergency Advocacy: Creating dedicated “First-Response” educational toolkits and rapid-referral guidance for GPs to stop early-stage SFN patients from being misdiagnosed with anxiety	The community will benefit by validating patient experiences during the terrifying onset of neurological symptoms, establishing an efficient diagnostic timeline, and preventing years of systemic neglect. Early intervention and support will save nerves from destruction and avoid further, spreading agony, dysautonomia and disability.
Advanced Pain Management Lobbying: Campaigning for expedited access to advanced diagnostics (such as skin punch biopsies) and cutting-edge neuromodulation or specialized pain treatments for those suffering from refractory, agonizing SFN.	The community will benefit by drastically improving overall quality of life, restoring physical function, and providing legal, safe, and effective physical relief to individuals trapped in agonizing pain cycles.

Curating a Specialized Clinician & Product Directory: Maintaining a public, vetted web directory of medical specialists who understand SFN/Sjögren’s, alongside a curated database of peer-recommended, scientifically backed support products, supplements, and lifestyle aids.	The community will benefit by bypassing the typical years of trial-and-error, gaining direct SFN Action UK | CIC Application.docx access to knowledgeable practitioners, and locating effective symptom-management tools without wasting personal funds on ineffective treatments.
Facilitating Peer-to-Peer Routing & Digital Spaces: Hosting a digital information hub that signposts patients to moderated, independent communication spaces (such as a dedicated Discord server) for community building, while explicitly leaving formal clinical/wellbeing care to professionals.	The community will benefit by reducing the profound social isolation that comes with a rare, invisible illness, allowing a marginalized patient base to share experiential knowledge and find solidarity safely.
Academic Integration & University Lobbying: Engaging with medical schools, neuroscience faculties, and university researchers to embed Small Fiber Neuropathy (SFN) and small-fiber pathology into undergraduate and postgraduate medical curricula.	The community will benefit by fostering a future generation of medical professionals, GPs, and neurologists who are trained experts in SFN from day one, drastically reducing future diagnostic delays.
Research Stimulation & Resource Pitching: Pitching SFN as a high-priority area for academic research projects, clinical trials, and university dissertations, highlighting its severity, high pain index, and growing prevalence.	The community will benefit by accelerating the discovery of new clinical treatments, bringing SFN on par with better-funded neurological conditions like MS, and expanding the global pool of SFN research experts.