Share your story with RareConnect!
RareConnect is a creation of Eurodis and NORD, seeking to join those with a rare disease globally. Rare Connect work with patient led groups with the intention that they can meet and interact with others who share the same syndrome in a supportive environment where they can share vital experiences, find resources and useful information.
OACS are the moderators for Rare Connect in the UK. Feel free to join the European Community for Fetal Anti-Convulsant Syndrome at RareConnect. Use the RareConnect logo, to take you to the Fetal Anti-Convulsant Rare Connect group.
Not everyone understands the importance of an organisation such as RareConnect, so it tends to be under utilised.
The beauty of RareConnect is that as an international platform, with a growing community, it can help you to interact with many others around the world. Posts that are placed there are translated into a growing number of languages; as are their resources.
As with a number of other syndromes, FACS has many uncommon challenges that fall under its umbrella. The complexities of Fetal Anti-Convulsant Syndrome are such that many effected will have problems that are only repeated in a few others. Finding these few to talk to and share thourghts, experiences and ideas is so very important when you are out there trying to provide the best for your child. RareConnect provides that perfect space in which you can place your post and access many others on an international level, making it far more likely that you will find someone else that is experiencing the very same challenge you are.
This one thing alone makes RareConnect an invaluable tool for those with a syndrome such as Fetal Anti-Convulsant Syndrome