February 2022 eNewsletter
This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.
Get Ready for #RareDiseaseDay

FOP is one of over 6,000 rare diseases affecting 300 million people worldwide. And Rare Disease Day - a global campaign - is an opportunity for all of us to come together, learn and spread awareness.

Starting February 18, we'll make updates and share information on our social media channels (Facebook, Instagram, Twitter and LinkedIn) and we ask you to join us, as well as the global community, in spreading the word.
Once again this year there are lots of virtual events for Rare Disease Day starting as early as February 22. The virtual nature of this year's events provides an incredible opportunity for FOP families to get involved. We hope you'll take part in at least one of these.

2022 Virtual Family Gathering Dates Announced and Call for Speakers

Mark your calendar to join FOP community members from around the world on Saturday, October 8 and Sunday, October 9 for this year's virtual two-day FOP Family Gathering.

During the Gathering you'll hear from experts in FOP symptom management and care, in addition to learning about the latest FOP research and community resources.

That's not all... each year attendees get to hear from members of the FOP community. If you have knowledge or experience from your journey with FOP that you think could benefit others, please let us know using our Call for Speakers form. All applications will be reviewed and speakers selected by the Family Gathering Success Council.

Palovarotene Capsules Approved by Health Canada for the Treatment of FOP

Health Canada has approved the use of SohonosTM (palovarotene capsules) for the reduction of formation of heterotopic ossification in adults and children aged 8 years and above for females and 10 years and above for males with FOP. It is important to note that Sohonos is only approved for eligible patients with FOP living in Canada.


IFOPA Expands Registry Manager Role

Sammi Kile originally joined the IFOPA in 2019 as FOP Registry Manager. As research and drug development grow, so too does the need for data beyond what is provided by the Registry. As other patient advocacy organizations are doing, the IFOPA has expanded Sammi's role to include more focus on observational research efforts in the FOP community.
 
Registration Open: Going to College with FOP Webinar

Join us for the first program in our 2022 Advocacy Series taking place on March 22 at 7 pm EST. The Going to College with FOP webinar will be presented by Annie Tulkan, Founder and Director of Accessible College.

Topics include:
• Role of the student and essential skills that students need for college
• Considerations for the college search
• Types of accommodations that students with FOP may need, including academic, residential and transportation
Don't Miss These Community-Led Events

Click the links below to learn more and sign up to participate:
Scrolling to a Cure  
 
Scrolling through stories on Reddit, Dina S. came across one about uncommon disorders. That’s how she met Joey. ‘Shocked’ by his description of FOP, she wanted to help Joey and others like him. Today, she’s one of the latest recruits to our Focus on Possibilities monthly giving team.