FND Hope
| File:FND Hope logo.jpg | |
| Formation | April 13, 2012 |
|---|---|
| Founder | Bridget Mildon |
| Type | Non-profit organization |
| Registration no. | 32-0400132 (EIN)[1] |
| Purpose | Alliance and advocacy for those with Functional neurological symptom disorder (FNsD) and Conversion disorder (CD) |
| Location | |
| |
| Website | fndhope |
FND Hope is a registered charity in the United States of America, and registered non-profit organization of the United Kingdom. It was the first organization in existence which raised awareness of, and supported individuals with functional neurological symptom disorder (FNsD) and conversion disorder (CD).[1][2]
Background[edit]
FND Hope was founded in April 2012 by Bridget Mildon to provide a means for people with FNsD to support and inform one another,[3] and works closely with leading professionals to provide information and resources to patients, carers, friends, family and doctors on an international stage.[4] Originally based only in the USA, FND Hope now operates on an international scale, and remains to be the only international organization supporting those with FND, with supporters from over 53 countries.[5]
FND Hope describe FND as being "fundamentally quite hard to understand, and is certainly easy to misunderstand ... the symptoms it produces are real, not imagined or put on".[6]
Contributions to FNsD[edit]
The organisation has been integral in influencing terminology[7] and research into the condition. In 2016 FND Hope created the first patient registry for the disorder, in collaboration with leading researchers, which is available through their website.[8]
Researchers including Rommelfanger et al. have recognised the work of FND Hope as being crucial, stating that
"Such a database not only addresses challenges in small recruitment pools for FND studies but also engages patients as participants as well as advisors in creating a future research agenda."[9]
Dr. Jon Stone and Dr. Alan Carson, one of the leading neurologists researching and treating FNsD, have also highlighted FND Hope as being useful resources to provide patients newly diagnosed with the disorder, as a means of explaining FND.[10] Stone also notes that FND Hope creates a greater need for doctors to be transparent with patients, something many are not used to doing.
Awards and achievements[edit]
In 2015 FND Hope was nominated and shortlisted for the UK National Diversity Award in the Community Organisation Disability category.[11] The National Diversity Awards pays tribute to grassroots organisations and had over 20,000 nominations.
References[edit]
- ↑ 1.0 1.1 1.2 1.3 "FND Hope, Inc". GuideStar. Retrieved March 25, 2017.
- ↑ Rommelfanger, Karen S.; Factor, Stewart A.; LaRoche, Suzette; Rosen, Phyllis; Young, Raymond; Rapaport, Mark H. (2017-01-01). "Disentangling Stigma from Functional Neurological Disorders: Conference Report and Roadmap for the Future". Frontiers in Neurology. 8. doi:10.3389/fneur.2017.00106. ISSN 1664-2295.
- ↑ "Patient Advocate Spotlight: Bridget Mildon". Chronic Disease Coalition. June 29, 2016. Retrieved March 25, 2017.
- ↑ https://bridge-registry.org/bridge-search/?bridge-query=FND+Hope
- ↑ "FND Awareness Day 2017 - FND Hope". FND Hope. Retrieved 2017-04-02.
- ↑ "Stumbling into the light". Pakenham Gazette. 2016-04-04. Retrieved 2017-04-02.
- ↑ Rommelfanger, Karen S.; Factor, Stewart A.; LaRoche, Suzette; Rosen, Phyllis; Young, Raymond; Rapaport, Mark H. (2017-01-01). "Disentangling Stigma from Functional Neurological Disorders: Conference Report and Roadmap for the Future". Frontiers in Neurology. 8. doi:10.3389/fneur.2017.00106. ISSN 1664-2295.
- ↑ "FND Scientific Registry - FND Hope". FND Hope. Retrieved 2017-04-02.
- ↑ Rommelfanger, Karen S.; Factor, Stewart A.; LaRoche, Suzette; Rosen, Phyllis; Young, Raymond; Rapaport, Mark H. (2017-01-01). "Disentangling Stigma from Functional Neurological Disorders: Conference Report and Roadmap for the Future". Frontiers in Neurology. 8. doi:10.3389/fneur.2017.00106. ISSN 1664-2295.
- ↑ Stone and Carson, Jon and Alan (2015). "Functional Neurologic Disorders". Continuum. 21 (3): 818–837.
- ↑ "The National Diversity Awards Announce 2015 Shortlist". ablemagazine.co.uk. Retrieved 2017-04-02.
External links[edit]
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