Associations Or Organizations
The Ehlers-Danlos Support UK
The EhlersDanlos Support UK is an association based in Borehamwood, England. They are dedicated to providing support and resources for individuals and families affected by Ehlers-Danlos Syndrome. As an organization, they strive to raise awareness and promote research for this rare genetic disorder.
Introduction to The EhlersDanlos Support UK
The EhlersDanlos Support UK is a non-profit organization founded in 1987, dedicated to supporting people affected by the Ehlers-Danlos Syndrome (EDS) and other connective tissue disorders. The organization aims to provide information, support, and guidance to individuals with EDS, their families, and healthcare professionals. What makes this company unique is their focus on raising awareness and improving the quality of life for those living with EDS and connective tissue disorders.Services & products
The EhlersDanlos Support UK provides a range of services to support individuals affected by EDS, such as information sessions, support groups, and helplines. They also offer educational materials for healthcare professionals to improve the understanding and management of EDS. Customers can purchase merchandise from their online store, with all proceeds going towards supporting the organization's mission.Location
The EhlersDanlos Support UK is located in Borehamwood, England. Borehamwood is a suburban town in Hertfordshire, located just outside of London. The area is home to a mix of residential and commercial properties, with a variety of shops, restaurants, and businesses. The closest public transportation options are the Elstree & Borehamwood Railway Station (0.7 miles), the Elstree Way Shops Bus Stop (0.1 miles), and the Furzehill Road Bus Stop (0.2 miles).Benefits
Customers should choose The EhlersDanlos Support UK because of their dedication to improving the lives of individuals with EDS and connective tissue disorders. The organization provides a range of services and resources to support those affected by these conditions, which are often overlooked or misunderstood by healthcare professionals. By choosing this company, customers can access valuable information, support, and guidance from a trusted source.Good to know
Customers should be aware that The EhlersDanlos Support UK is a non-profit organization and relies on donations to fund their services and resources. Additionally, while the organization provides information and support, they are not a substitute for professional medical advice, diagnosis, or treatment.Reviews
Customers have praised The EhlersDanlos Support UK for their dedication to improving the lives of those affected by EDS and connective tissue disorders. Many have found their resources and support groups to be invaluable in managing their condition and navigating the healthcare system. Some have noted that the organization could benefit from more funding to support their mission.Amenities
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membership -
networking opportunities
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resource library
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training programs
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online community
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newsletter
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advisory board
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advocacy
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volunteer opportunities
FAQ
What benefits does your association provide to its members?
Our association provides a range of benefits to our members, including access to information and resources about Ehlers-Danlos syndrome, peer support, and opportunities to participate in events and activities that promote awareness and advocacy for the condition. We also offer discounts on products and services that may be helpful to individuals with EDS, such as medical alert bracelets and mobility aids.How do you advocate for the interests of your members?
We advocate for our members by working with policymakers, healthcare professionals, and other stakeholders to raise awareness of Ehlers-Danlos syndrome and improve the quality of care and support available to individuals with the condition. We also encourage our members to become advocates themselves, by sharing their stories and experiences and participating in advocacy campaigns and initiatives.What networking opportunities do you offer to members?
We offer a variety of networking opportunities to our members, including online forums, support groups, and social media groups where members can connect with others who have EDS. We also organize events and activities that bring members together, such as conferences, workshops, and fundraising events.Can you provide examples of successful initiatives or projects your organization has undertaken?
Some examples of successful initiatives and projects we have undertaken include raising awareness of Ehlers-Danlos syndrome among healthcare professionals, advocating for improved access to treatment and support services, and promoting research into the condition. We have also developed a range of resources and tools for individuals with EDS and their families, such as information leaflets, online training modules, and support groups.How do you ensure transparency and accountability in your operations?
We ensure transparency and accountability in our operations by maintaining clear and open lines of communication with our members and other stakeholders, providing regular reports and updates on our activities and finances, and adhering to best practices in governance and accountability. We also welcome feedback and input from our members and other stakeholders, and are committed to continuous improvement and learning.Reviews
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Maria S
29-12-2022
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Liz Innocent
Have needed their advice many many times. Always quick to answer with lots of help given.
29-05-2022
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Penailised Unicorn
29-05-2022
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Tarren Williams
29-05-2022
