Navigating the Digital Landscape of FND
Essential Websites for Support and Information
Functional Neurological Disorder (FND) is a complex and often misunderstood condition.
The digital age has created many resources for people affected by FND.
There are websites led by patients and experts that offer information, support, and community for those with FND, their families, and healthcare workers.
If you or someone you know is dealing with an FND diagnosis, then these are some useful websites to help guide you:
1. FND Hope: A Global Hub for Patient Advocacy and Resources
FND Hope (www.fndhope.org) stands as a cornerstone of the FND online community.
This international patient-run registered charity offers a vast and ever-expanding collection of materials tailored for those with functional neurological disorders.
It covers a wide range of symptoms like movement disorders and weakness.
With dedicated organisations in the USA, UK, Netherlands, and Canada, FND Hope provides country-specific information and support.
Their website is a fantastic starting point for understanding FND, finding local support groups, and engaging with research initiatives.
They also host a comprehensive video library and advocate for increased awareness and improved care.
2. Neurosymptoms.org: Expert Insights from a Leading Neurologist
Neurosymptoms.org (www.neurosymptoms.org), developed by Professor Jon Stone, a neurologist with a special interest in FND, is an exceptionally valuable resource.
This website offers a clear and accessible guide to FND, covering symptoms, causes, treatments, and patient stories.
It’s an excellent place to gain a deeper understanding of the condition from a highly reputable source, free of advertising and biases.
The site also links to other relevant organizations and offers an FND app for additional support.
3. FND Action: UK-Based Support and Community
For those in the UK, FND Action (www.fndaction.org.uk) is a vital patient-led charity.
They provide comprehensive information about FND, with a strong focus on support for individuals and their caregivers.
FND Action offers online support groups, primarily through Facebook, creating a safe and welcoming space for people to connect, share experiences, and alleviate feelings of isolation.
Their website is dedicated to becoming a key resource for the FND community and actively advocates for better health and support services.
4. CAP TNF: French Based Support and Community
For those living in France, CAP TNF (www.troublesneurologiquesfonctionnels.fr) are patients of the Bipol-AIR Center located in Lyon (France) accompanied by two nurses and supported by other professionals.
Comprendre Accompagner Parler des Troubles Neurological Fonctionnels provide essential information on FND in the French Language,
5. FND Together: Canadian-Based Support in French & English
For those in Canada or need support in French, FND Together / TNF Ensemble (www.fndtogether.com) is a registered charity in Canada, operated by FND patients and their loved ones.
They are volunteers.
Their goal is to support individuals diagnosed with Functional Neurological Disorder (FND).
FND Together provides a platform for individuals affected by FND to join together in support of one another as peers.
They exist to help people living with FND experience better recognition and support, improved health and social services, and they strive to provide a strong common voice on behalf of people affected by FND.
Their focus is to help patients with FND and to create a network of services with other organisations and institutions in Canada and beyond their borders.
6. myFND: A Personalised App for Symptom Management
myFND (www.myfnd.co.uk) is a secure and user-friendly app designed to assist individuals in managing their FND symptoms.
It offers a secure login for personal details and symptom tracking, a vast library of trusted information, and self-management techniques.
The “My Check-in” feature allows users to log their symptoms over time, helping to identify patterns and triggers.
“My Story” provides visual charts of symptom changes, and the app also offers signposting to other helpful organizations.
7. Functional Neurological Disorder Society (FNDS): Advancing Research and Professional Education
While primarily a professional society, the Functional Neurological Disorder Society (www.fndsociety.org) is an important website for anyone interested in the advancement of FND understanding and care.
Comprised of clinicians, scientists, and other healthcare professionals, the FNDS aims to increase awareness and education, and improve the diagnosis and treatment of patients.
Their website offers virtual education courses and podcasts, showcasing the latest in FND research and clinical approaches.
8. FND FrieNDs: Practical Support in the UK’s South West
FND FrieNDs (https://fndfriends.com/) is a UK charity specifically focused on promoting awareness and providing practical support in the South West of England.
Their website offers information and support for individuals diagnosed with FND, as well as their friends, family, and carers.
They emphasise the importance of community and provide information on resources like social care teams and wheelchair access, making them a valuable resource for practical assistance.
Other Notable Resources:
- NonEpilepticSeizures.com (www.nonepilepticseizures.com): A US-based site run by health professionals, specifically for patients with dissociative (non-epileptic) seizures, a common manifestation of FND. It offers detailed self-help information.
- FND Australia Support Services Inc (www.fndaus.org.au): Provides information and support specifically for FND services in Australia, including an app with strategies to help people understand their condition.
- Mindgardens FND Clinic Resources (www.mindgardens.org.au/functional-neurological-disorder-fnd-resources/): Offers a collection of consumer and clinician FND resources from Australia, focusing on increasing understanding and finding support.
Conclusion
In conclusion, the online resources for FND are growing, offering hope and support for people with this condition.
These websites give important information, create a community, and help individuals with FND understand and manage their symptoms.
As research advances and awareness increases, these digital platforms will keep helping improve the lives of those with Functional Neurological Disorder.
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