ARTHUR'S QUEST
Home - Arthurs Quest
1185380
2019
TN10 4QS
arthursquest.org
arthursquestcharity
Podobné organizace
THE HENRY SPINK FOUNDATION |
|
Merlin Neuro Therapy Centre Ltd |
|
THE EDEN DORA TRUST FOR CHILDREN WITH ENCEPHALITIS LTD |
|
IAN PRATT MND FOUNDATION |
|
KYLE'S GOAL |
Podobné organizace global
Cure Ahc Foundation |
|
Autism Discovery and Treatment Foundation Inc |
|
Eleanor Kaplan Foundation Inc |
|
Lightning and Love Foundation |
|
HOPE FOR HARVEY FOUNDATION INC |
Podobně sociální sítě (155)
Okresní fotbalový svaz PELHŘIMOV156 |
|
Nadace SYNER157 |
|
Česká logistická asociace157 |
|
Římskokatolická farnost Švihov157 |
|
Aerobic team EN, z. s.158 |
Více Vrozené vady, genetická onemocnění
DiaKar, z. ú.Karlovy Vary |
|
Český institut biosyntetické psychoterapie, z.ú.Praha |
|
Parkinson-Help z.s.Praha |
|
Občanské sdružení Imunodeficitních pacientů HAE / AAE z.s.Brno |
|
Hemojunior, z.s.Praha |
Novinky
(fb)
SLC6A1 Connect UK, as part of UK Rare Epilepsies Together (UKRET), is amplifying the challenges facing individuals with rare and complex epilepsies and their families across the UK. At SLC6A1 Connect UK we know from our real-world experience that these challenges are complex and also believe that they cannot be solved without first identifying and raising awareness of the issues. To inform this vital work, we took part in a UKRET focus group and contributed lived experiences from our community of families. Over the last few weeks, we have bene spotlighting these challenges, which revealed issues across diagnosis, treatment and the coordination of care for patients. People living with rare and complex epilepsies deserve better. Please help us bring attention to these challenging by sharing our messages far with hashtag #WhyAren’tTheyListening? (fb)
Poslední komentáře
💙 Together, we can make a difference in the lives of families facing SLC6A1. Let's support Arthur's Quest in funding vital research and raising awareness! #arthursquestcharitydetail |
|
👏 Love seeing the commitment to supporting families impacted by rare diseases! Let’s keep spreading the word about SLC6A1 and push for that much-needed research. Keep it up!detail |
Poslední diskuze
1. How can we effectively raise awareness about SLC6A1 Rare Epileptic Encephalopathy and the challenges faced by affected families?Odpovědí: 3, Naposledy před 1 den detail |
|
2. What innovative approaches can be taken to support research and potential treatment options for rare diseases like SLC6A1?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
TN10 4QS
O společnosti
- G20, H30, H32, G80 -
SLC6A1 What if your child wasdiagnosed with a disease sorare it didnt have a name. THERE IS A CURE Meet Arthur In 2018 our wonderful happy little boy Arthur was diagnosed with SLC6A1 a rare debilitating neurological condition that currently has no cure. It would change the course of his life forever. Arthur suffered from hundreds of seizures a day.
Vrozené vady, genetická onemocnění Výzkum rakoviny Konkrétně pojmenované nemoci
