Joining a Rare Disease Club

I friend of mine’s son has Charcot-Marie-Tooth Disease. He’s been to a few specialists that have some knowledge of this rare disease but not giving him much hope as he is in his mid twenties and will eventually be in a wheel chair. He has so much issues with his hands! So young with such a disease! I pray for some resolve of this rare condition!!!

You mean like a monthly loot box where you get books gadgets and food to help you cope? I think that would help break up the despair and monotony of Dr appointments.

I think that there should be. I have NVLD and that is considered rare I think.

rare disease club but everyone has something different lol but yeah I get it, it would be nice to find and speak to someone who has the same condition as me