Enby is a Russian patient organization created with the goal of systemically assisting children with a diagnosis of neuroblastoma and members of their families. The name "Enby" is derived from the abbreviation "NB" - so it is customary to designate the diagnosis "neuroblastoma" among patient communities and specialists all over the world.
| Anby | |
|---|---|
| Type of | Charity organization |
| Year of foundation | 2016 |
| Founders | M.N. Goleva, A.N. Zakharova, Yu.S. Kovalenko |
| Location |  Russia |
| Field of activity | help children with a diagnosis of neuroblastoma and their families |
| Site | neuroblastoma.help |
General information
The organization’s history began with the initiative of three parents of children with a diagnosis of “neuroblastoma” [1] - in 2016 they created groups for parents on Facebook and VKontakte social networks in order to share experience and information about the disease. In these communities, for the first time in Russian, parents have the opportunity to get useful information and support, share experiences and their struggles. Gradually formed a close-knit community of parents from different countries - Russia, CIS countries, far abroad. In July 2018, a charity fund for helping people with a diagnosis of “neuroblastoma” and their family members “Enby” was registered. The fund was created in memory of the boy Roma Golev, who fought with neuroblastoma almost his entire life. Enby works in Russia, is engaged in systemic projects to help children with neuroblastoma and their families and does not conduct targeted treatment fees.
Enby's mission is to help children with a diagnosis of "neuroblastoma" and their families walk a difficult path to fight the disease. The site of the organization "Enby"
In 2018, the parental organization of children with a diagnosis of Neuroblastoma Enby became a member of the Childhood Cancer International (CCI), an international patient cancer organization [2]
Directions of work of Enby:
- information support and the creation of a knowledge base for the diagnosis
- patient routing
- providing access to advanced treatment and clinical research information
- translation of foreign brochures and articles into Russian
- psychological and legal support for families, protecting the rights of patients and their families
- attracting experts for consultations
- participation in scientific and patient conferences [3] [4] [5] [6]
Notes
- ↑ How Moms Teamed Up and Found a Fund Against Cancer The Village (October 26, 2018). Date of treatment July 3, 2019.
- ↑ Charitable Foundation NB. Europe Members CCI .
- ↑ Editorial p. An international conference of specialists involved in the study and treatment of patients with neuroblastoma is a view of the Public Organization of Parents of Children with Neuroblastoma. Russian Journal of Pediatric Hematology and Oncology (Russian Railways). 2018; 5 (3): 106. (Russian) .
- ↑ VIII Regional Conference of the European unit of the international organization Childhood Cancer International. Editorial c. Our community is the work of NODGO. Russian Journal of Pediatric Hematology and Oncology (Russian Railways). 2017; 4 (3): 108. (Russian) .
- ↑ Meeting of patient and charitable organizations in the framework of the IX Interregional meeting of NODGO (Russian) .
- ↑ Doctors + parents Rubric Health (Russian) .
Links
- neuroblastoma.help - official site of Enby
- Enby on Instagram
- Anby's official Facebook page