ECTODERMAL DYSPLASIA SOCIETY
ED Society - Ectodermal Dysplasia
1089135
2001
GL53 7ER
edsociety.co.uk
EDSocietyUK
EDSocietyUK
Ectodermal Dysplasia Society
The Ectodermal Dysplasia Society is a UK-based charity dedicated to supporting individuals and families affected by Ectodermal Dysplasia (ED), a rare genetic condition. Registered as a charity with the number 1089135, the organisation plays a vital role in raising awareness, providing advice and support, and promoting education about ED.
Mission and Activities
The society's primary mission is to improve the lives of those affected by Ectodermal Dysplasia, a group of genetic disorders that impact the development or function of the teeth, hair, nails, and sweat glands, and can also affect other parts of the body such as the skin, eyes, inner ear, fingers, and toes.
The society provides information, advice, and support to individuals and families, helping them navigate the challenges of managing this complex condition. It also focuses on educating the medical profession and the general public about Ectodermal Dysplasia to ensure better diagnosis and care for those affected. Additionally, the society supports research and maintains a network for mutual support among its members.
Support Services
The organisation offers a range of support services, including equipment and grants to families in need. It acts as a liaison between families and schools to ensure that children with ED receive appropriate care and attention during their education. By providing personalised support, the society aims to empower individuals and families to manage Ectodermal Dysplasia effectively, allowing them to live fulfilling lives.
Goals and Vision
The ultimate goal of the Ectodermal Dysplasia Society is to ensure that every individual affected by this condition has the necessary knowledge and resources to manage it effectively. The society also strives to equip medical professionals with the information they need to provide the best possible care for those with Ectodermal Dysplasia.
Funding and Community Support
As a non-profit organisation, the society relies on community donations and fundraising efforts to sustain its vital work and expand its services to support more families affected by Ectodermal Dysplasia.
[1] https://edsociety.co.uk [2] https://edsociety.co.uk/support/raiseawareness/ [3] https://rarediseases.org/organizations/ectodermal-dysplasia-society/ [4] https://www.nationalvoices.org.uk/member/ectodermal-dysplasia-society/ [5] https://painuk.org/members/charities/ectodermal-dysplasia-society/
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Podobně sociální sítě (1222)
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GYPRI, o.p.s.1232 |
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Nadace O21234 |
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Společnost pro Moravu a Slezsko, z.s.1258 |
Více Nemoci, poruchy a lékařské disciplíny jinde neuvedené.
Novinky
📢 If you’re a woman living with ED this is your chance to be heard. Complete our short survey to help launch vital research into how ED affects women. If you’ve had any issues with the survey, please email us at diana@edsociety.co.uk 👉🏻https://t.co/OOi7KDV5lY https://t.co/99Xg9Eh06v (tw)
We’re excited to share findings from a new study exploring the social media experiences of adults with #visibledifferences. 17 people shared their stories, highlighting challenges and positives Full academic paper recently published👇🏼 https://t.co/IRkTI0plQp @CAR_UWE https://t.co/ITvPHDBvBv (tw)
Poslední komentáře
So proud to support the Ectodermal Dysplasia Society! Together, we can raise awareness and make a real difference for individuals and families affected by this condition. 💙 #SupportED #CommunityMattersdetail |
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Every little contribution helps! Let’s join hands and ensure that those with Ectodermal Dysplasia have access to the resources and support they need. 🙌💚 #TogetherWeCan #EDSocietydetail |
Poslední diskuze
What are some effective strategies for raising awareness about Ectodermal Dysplasia in local communities and schools?Odpovědí: 3, Naposledy před 1 den detail |
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How can collaboration between families, researchers, and healthcare professionals improve day-to-day management for those living with Ectodermal Dysplasia?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
GL53 7ER
O společnosti
- G99, E02, G86, E30 -
Welcome to the ED Society We are a dedicated UK charity committed to supporting families and individuals affected by the rare genetic condition Ectodermal Dysplasia ED. Our mission is to raise awareness provide comprehensive support and advice and connect you with leading medical professionals. We understand the unique challenges faced by those living with ED and we are here to help. Whether you need guidance on daytoday management educational resources or assistance in liaising with schools to ensure your children receive the proper care and attention they need we are by your side every step of the way.
Nemoci, poruchy a lékařské disciplíny jinde neuvedené. Správa a technická pomoc Zdravotnická léčebná zařízení (převážně ambulantní)
