CurePHN.org 

A patient led initiative to advocate for research into Post Herpetic Neuralgia and find better treatment options directed towards a cure for PHN. 

Basic guiding principles for this endeavor:

1) Patient centered - Most PHN patients are well versed with their condition oftentimes better than their doctors! We need to use this resource and collective knowledge to find traditional or non-traditional approaches to treat this condition.  

2) Create inter-disciplinary collaborations

3) Patient registry 

4) Focus on immediate translational potential 

5) New testing modalities for this invisible disease. We need objective findings that correlate with subjective symptoms.

6) Patient led advocacy to government and funding institutions so that funding goes where the most impact can be made. 

Goals /To do: 

1) Create a patient registry/ database with medical history, labs, treatment history, genomic data (if available) and symptom information. 

2) Create collaborations with basic science labs, industry and physicians with patient centered focus.

3) Create a non-profit to fund inter-disciplinary studies with immediate translational potential.

3) Patient portal to upload relevant information into a database and allow signup for trials

4) Patient samples (blood, saliva etc) repository 

5) Clinician/researcher portal to request patient samples for studies directly from patients who opt-in.

6) Identify/ create funding sources for above initiatives.   

7) Volunteers are welcome and needed! 

 

About me:

I am a practicing physician with basic science and clinical trial experience. Personally affected by Zoster and recurrent post herpetic neuralgia. After looking over the literature over past few decades, I realize that there is still a lot to be done in this condition. I recently joined a Facebook group for PHN patients and realized the unfortunate number of people greatly suffering because of this condition for years. This website is an attempt to collate information about PHN and bring together patients and their advocates, basic researchers, clinicians and trialists to find new treatment options aimed at better symptom control or even better to find ways to eliminate PHN and give patients their lives back.

Disclaimer: None of the information in this website constitutes medical advice. It is considered informational only to enable further research into this condition and to identify newer treatment modalities.