A New Way to Navigate the FOP Journey

Welcome Packet Helps Families Around the Globe

Dr. Chris Scott, Cape Town, South Africa, shows off his delivery of IFOPA Welcome Packets

A newly designed Welcome Packet now offers support to recently diagnosed patients, as well as patients who have had a diagnosis but never connected to IFOPA resources and other people with FOP.

“We know from our experience working with families that connecting isolated or newly diagnosed individuals to the IFOPA and the FOP community is a vital step in their journey,” said IFOPA Family Services Manager Hope Newport.

“This packet allows us to meet families where they are in their FOP journey. It gives them the tools and resources to understand they’re not alone and that the vast network of the IFOPA is ready to support them when they're ready.”

The new Welcome Packet includes information and resources on the following topics:

  • 10 Tips for Resilient Living
  • Ability Toolbox – Everyday Tools for Independent Living
  • Drug Development and Clinical Studies & Trials
  • Dental Care Resources
  • Emergency Contact Card with FOP Doctors (localized for each country)
  • Emergency Resources and Managing Medical Needs
  • FOP Registry
  • Harold and Elaine Kaplan Quality of L.I.F.E. Awards
  • IFOPA FOP Biobank (US only)
  • Your IFOPA

The Welcome Packet provides overviews of the many education and support programs that are available, as well as ways for a person with FOP to support research, like the FOP Registry and Biobank. For pediatric patients, there is also a small teddy bear with an IFOPA logo shirt.

The materials are available in Dutch, English, French, German, Italian, Portuguese, Russian and Spanish. Thank you to the International President’s Council leaders from Argentina, Brazil, France, Germany, Italy, Mexico, Russia and The Netherlands for assisting with the translation process.

So far, Welcome Packets have been delivered to doctors across the United States and in Argentina, Brazil, Canada, Mexico, South Africa and the United Kingdom. Packets are currently en route to Australia, France, Italy, Russia and The Netherlands.

No matter where someone is in the world or in their journey with FOP, the packet lets them know there are people who understand how they feel and can provide invaluable guidance and support. The hope is that it’s a first step in patients and families building life-long relationships with the IFOPA and FOP community.

Thank you to Ipsen and Regeneron for their support that made these brand-new Welcome Packets a reality.

To request a copy of the IFOPA’s new Welcome Packet, click here

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