Calendar of Events

  • FOP Bereaved Families Virtual Meetup

    Thursday, April 22, 2021 at 07:00 PM Eastern Time (US & Canada)

    The FOP Bereaved Families Group will meet on Thursday, April 22 at 7 pm EDT. This group is an opportunity for those who have lost a family member to FOP to support each other in loss and grief. To receive information on participating in the April meeting, please email Marilyn Hair at [email protected].

  • Riding for Tyler - #cureFOP

    Saturday, April 24, 2021 at 10:00 AM Eastern Time (US & Canada)

    Join us for the first-ever Riding for Tyler #cureFOP trail ride Saturday, April 24 at 12 pm

    Riders of all ages are invited to join us in Moneta, VA or you can ride virtually from your community. To register to ride virtually or in-person*, click here. To donate to support the event, click here

    PRIZES
    As you register to ride you’ll have an opportunity to set up a fundraising page.

    Anyone who fundraises at least $100 receives a free event t-shirt (unisex)!

    The individual rider who raises the most money will receive an embroidered horse blanket. 

    The team of 4 riders who raise the most money will each get an embroidered horse blanket. 

    The 2nd and 3rd place teams of 4 riders will each get an embroidered rump rug. 

    T-SHIRTS
    To purchase an event t-shirt, click here.

    *in-person is limited to the first 10 riders

     

  • Rare on the Road Leadership Tour In-Person Training and Networking

    Saturday, May 01, 2021 at 12:00 PM Eastern Time (US & Canada)

    Las Vegas, NV 

    This is not an IFOPA-sponsored event.

    This event is part of the Global Genes and EveryLife Foundation Rare on the Road Leadership Tour. Rare on the Road events are held around the country and are designed to develop the next generation of advocacy leaders. More information at 
    https://raretour.org/

  • Rare on the Road Leadership Tour In-Person Training and Networking

    Saturday, May 15, 2021 at 12:00 PM Eastern Time (US & Canada)

    Miami, FL

    This is not an IFOPA-sponsored event.

    This event is part of the Global Genes and EveryLife Foundation Rare on the Road Leadership Tour. Rare on the Road events are held around the country and are designed to develop the next generation of advocacy leaders. More information at https://raretour.org/

  • Rare on the Road Leadership Tour In-Person Training and Networking

    Saturday, May 22, 2021 at 12:00 PM Eastern Time (US & Canada)

    Chicago, IL

    This is not an IFOPA-sponsored event.

    This event is part of the Global Genes and EveryLife Foundation Rare on the Road Leadership Tour. Rare on the Road events are held around the country and are designed to develop the next generation of advocacy leaders. More information at 
    https://raretour.org/

  • National Organization of Rare Disorders (NORD) Patient and Family Forum Living Rare, Living Stronger Interactive Virtual Forum

    Saturday, June 26, 2021 at 12:00 PM through June 27, 2021 Eastern Time (US & Canada)

    This is not an IFOPA-sponsored event. More information at https://rarediseases.org/living-rare-forum

    Living Rare, Living Stronger is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases. We will hear from patients, caregivers, and advocates, as well as the medical community and how everyone works together for the benefit of the rare disease community.  
  • EveryLife Foundation Rare Disease Week

    Monday, July 19, 2021 at 12:00 PM through July 22, 2021 Eastern Time (US & Canada)

    This is not an IFOPA-sponsored event. More information will be available later this year at https://everylifefoundation.org/events-schedule/
  • Global Genes RARE Patient Advocacy Summit

    Tuesday, September 28, 2021 at 06:00 PM through September 29, 2021 Eastern Time (US & Canada)

    This is not an IFOPA-sponsored event. 

    Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. More information at https://globalgenes.org/event/patient-summit/

  • American Society of Bone & Mineral Research Annual Meeting 2021

    Friday, October 01, 2021 at 12:00 PM through October 04, 2021 Eastern Time (US & Canada)

    Metro Toronto Convention Centre, Toronto, Ontario, Canada
    This is not an IFOPA-sponsored event. More information will be available later this year at asbmr.org.

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