• Lessons From Rare Genetic Diseases: From Novel Biology to Drug Discovery with Aris Economides, PhD, Regeneron Pharmaceuticals

    Wednesday, May 24, 2017 at 12:00 PM

    On Wednesday, May 24, the UCLA Clinical and Translational Science Institute and the Eli & Edythe Broad Center of Regenerative Medicine and Stem Cell Research will host a lecture on "Lessons From Rare Genetic Diseases: From Novel Biology to Drug Discovery" at the University of California, Los Angeles (UCLA).

    Aris Economides, PhD, Vice President, Regeneron Pharmaceuticals, and the lead scientist in the discovery of Activin A's role in heterotopic ossification and FOP, will deliver the lecture.  

    The lecture will take place on Wednesday, May 24, from noon to 1 pm PT followed by a reception afterwards. The UCLA Clinical and Translational Science Institute has invited FOP patients and advocates to join. This is a great opportunity to meet, talk and ask questions with one of the leading scientists working on FOP today. Learn more about Regeneron's clinical development program

    Reservations are not required, but please email if you're interested in attending so we can connect you with other FOP families. More information

    The auditorium is located on the first floor of the building, which is at street level. UCLA parking lot 9 is the nearest parking lot to the auditorium. The facility is fully wheelchair accessible.

  • Canadian FOP Conference & Family Medical Clinic 2017

    Friday, June 16, 2017 at 08:30 AM through June 18, 2017

    The Canadian FOP Network is pleased to bring together leading FOP experts, researchers and pharmaceutical companies with FOP families to focus on research, awareness and clinical practice. 

    We are grateful to our main sponsors Clementia Pharmaceuticals & Sick Kids Foundation for their support and to Thames Valley Children's Center (TVDD) for providing our conference venue.  

    Conference & Family Medical Clinic Agenda 
    Conference is June 16, 8:30am — June 17, 10pm

    Thames Valley Children's Centre
    779 Base Line Rd. E 
    London, Ontario

    Conference Registration Fees 
    (includes Friday meet & greet reception, conference, lunch breaks and clinics)

    • Patients with FOP receive complimentary regsitration
    • $30 adults (16 years and up)
    • $20 siblings (children and youth 2 to 16 years of age)

    Saturday Dinner 

    • $30 adults (13 years and up)
    • $10 children and youth (2 to 16 years of age)

    Online Registration for Conference & Dinner 
    Please register online by going to You can pay the registration fees online with a credit card or choose the “Other Payment Options” and “Pay Offline” option. Look for the other payment option under the green register button. 

    Travel Arrangements
    Registrants are responsible for their own travel. Fly directly to London International Airport YXU or drive from Detroit, Michigan, USA or Toronto International Airport YYZ. London is a 2 hr drive from either of these major cities.  

    Family Travel Subsidies
    Travel subsidies may be available thanks to the support of our sponsors. Please e-mail Carrie Connell at with your request. Confidentialty of all information will be maintained.   

    Hotel Reservations

    Four Points by Sheraton London
    150 Wellington Rd. S 
    London, Ontario

    A block of rooms is being held until May 16. Rooms are $119 for room with one king; $129 for room with two queen beds; $159 for suite with king bed/Jacuzzi tub & pullout; $159 for tower suite with two double beds and pullout. Please call (519) 681-0600 and book under “SPS Medical Conference”. 

  • Bombers for Bones

    Saturday, July 15, 2017 at 12:00 PM


    Help us fund research for a cure for FOP by participating in our 1st Annual Home Run Derby and Skills Competition! All ages are welcome including adults!

    Check back for more information and registration instructions soon!

  • FOP e.V. Meeting in Valbert, Germany

    Friday, July 28, 2017 at 12:00 PM through July 30, 2017
    FOP e.V. Meeting in Valbert, Germany

    Save the date!

    Next FOP e.V. Meeting will be July 28 to 30, 2017 at the House Nordhelle in Valbert, Germany.

    For more information, please go to or contact Roger zum Felde at

  • Russia FOP Meeting

    Wednesday, August 02, 2017 at 12:00 PM through August 04, 2017
    Russia FOP Meeting

    Save the date!

    Russia FOP Meeting will be held in Moscow, August 2 to 4, 2017.

    For more information, please contact Vladislav Grachev at or  Mihail Belyaev at

  • Dinner & Auction for Lincoln

    Friday, August 18, 2017 at 12:00 PM
  • III Encuentro Latinoamericano de FOP

    Monday, August 28, 2017 at 12:00 PM through August 29, 2017
    Buenos Aires, Argentina

    Save the date!

    More information to come.

  • ZipperQ6

    Saturday, October 07, 2017 at 12:00 PM
    West Bend Green in Claremore, OK

     Family-friendly event for everyone!
    • Annual BBQ Challenge and Cook Off
    • BBQ teams serving chow from 4 pm – 6pm (Get your Tasting Kits at event!)
    • Also Enjoy:
       o Free Admission
       o Live Music
       o Free Pop/Water
       o Free Kids Games
       o Snow Cone Truck

    Sponsorship and BBQ Challenge registration coming soon!


  • 2018 FOP Friends, UK Conference & Family Gathering

    Friday, May 18, 2018 at 12:00 PM through May 20, 2018
    2018 FOP Friends, UK Conference & Family Gathering

    Save the date!

    2018 FOP Friends, UK Conference & Family Gathering will be May 18 to 20, 2018.

    More information to come.

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