-
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 pmRiders 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.
