Neuropathy Action Foundation

In 2021, the NAF decided to shift its education efforts from Multifocal Motor Neuropathy (MMN) to Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). To that end we conducted an international Quality of Life (QOL) Patient Survey. The survey focused on three primary areas: timely and accurate diagnosis, efficacy of treatment, and the impact of the disease on patients quality of life. While 70% of respondents reported that they were diagnosed between the ages of 41 and 65 years old, more than 54% of those completing the survey reported that it took more than one year to be accurately diagnosed. The majority of the misdiagnoses were made by Neurologists (60%) and Family Care Providers (21%). "It is very clear that we need to do a better job at accurately diagnosing these patients. The sooner we can identify CIDP, the sooner we can start individuals on the proper therapy, alleviate their symptoms and improve their lives, said Jonathan Katz, Chief of Neuromuscular Services at California Pacific Medical Center. When asked about treatment options, 76% reported receiving intravenous immunoglobulin (IVIg) and 11% reported receiving subcutaneous immunoglobulin (SCIg). A reduction in symptoms was reported within three months of their first Ig treatment by 68% of respondents. Only 7% reported that Ig did not help them manage their symptoms. If recommended by their Neurologist, 67% would consider SCIg treatment. Interruptions in treatment due to COVID-19 were experienced by 39% of the respondents. It was clear from the results that we need to do a better job of bringing awareness to CIDP.Therefore, in 2023 the NAF launched a nationwide targeted digital education awareness campaign on CIDP. The 2023 NAF social media advertising campaign aimed at growing awareness and providing resources about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) to those whose lives have been affected by the condition. The campaigns primary aim was to generate leads (email contacts) and raise awareness about CIDP among people who may be unknowingly living with the condition, people who are seeking treatment options or additional information, and members of the medical community. Leads are valuable for NAF because they enable us to continue to raise awareness, to keep CIDP and NAF top-of-mind for providers through email outreach, and to encourage patients to talk to their doctor to see if they might possibly be living with CIDP. The campaign featured a series of graphic elements representing key patient profiles; new leads were incentivized by a PDF resource that outlines key facts about CIDP, and our ads were seen over 1.5 million times during the two-month campaign (an increase of 344,687%), earning the organization over 9,000 individuals email addresses, consisting of a mix of patients, caregivers, and neurologists. Additionally, we received over 59,000 social media engagements on Facebook and Instagram (a 1.2 million percent increase!) and observed our website traffic increase drastically. Our ads average click-through-rate was 2.9%, well above the platform benchmark of 0.83%, meaning that we were able to successfully deliver relevant advertising to users based on their demographic profiles. From the patient and caregiver perspective, we received the greatest interest from women 65+. Additionally, users identifying as female consistently comprised nearly 90% of the leads generated by the campaign, and users over the age of 65 ultimately made up nearly 64% of total leads. For the section that states: Other 2023 services provided and accomplishments include: please just update the numbers in red font below:The NAF continued its bi-monthly Patient Voice newsletterHelped over 200 patients with medication access issuesAnswered over 1,200 patient emails/phone calls and either emailed or mailed over 375 informational brochures to patients across the U.S.Continued a Diabetic Peripheral Neuropathy (DPN) awareness campaign in Spanish and EnglishThrough our website (which is constantly updated) and patient brochures the NAF reached millions of patients and interested parties obtain the necessary resources, information and tools to access individualized treatment to improve their quality of life.