Connecting people living with Apert syndrome worldwide


Elijah's Hope has partnered with the European Organization for Rare Diseases, EURORDIS, to create an international online community for people living with Apert syndrome and their loved ones.

This is our forum where families can join together from across the world, share experiences and stories and let us all know if you find or write a new Apert-related blog post too! It's our very own community for people with Apert and their families so come over and join us!


Through the community on RareConnect, people living with Apert can communicate, sharing experiences and information in a safe, moderated online forum. With human translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian or Spanish languages.

Why Should I Join ?

  • Human translation across: English, Spanish, French, German, and Italian
  • Moderation by the international patient group representatives and EURORDIS means a focused, safe, conversation
  • Dedicated support and moderation from 2 community managers at EURORDIS
  • Patient group activities from around the world are highlighted on the community and on RareConnect and EURORDIS social media
  • ADD your story through YOUR PROFILE after registering and it will be translated across 4 other languages for the benefit of others.
  • All conversations are saved and tagged by subject.
  • An entry point to becoming more involved in other EURORDIS advocacy projects like Rare Disease Day
  • Patient focused community: data is never sold, no advertising.
  • You can ask questions by contacting: [email protected]

How Do I Register ?

It's easy, quick and safe. First, go HERE.

Connect with your Facebook or Google account,

OR create a new, anonymous username as long as you follow our Online Communities Charter.

After you register you will be sent a confirmation email to validate. Check your spam folder in case it ended up there. Click on the link in that email and validate your address.

Now you're ready to complete your profile, and introduce yourself on the Forum where you can begin connecting with others from around the world who understand.


Elijah’s Hope has been instrumental in establishing an international social network for people with Apert syndrome on the RareConnect platform.

RareConnect logo

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