FOP Connection November Newsletter
FOP Connection
Nov 2016 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.
Clementia to Host Important Webinar
Clementia

On November 30, learn about the top-line results from the phase 2 trial of palovarotene for treatment of patients with FOP from Dr. Fred Kaplan, The University of Pennsylvania, and Dr. Donna Grogan, Clementia.

  Learn More and Register Online > 
 
FOP Connection Goes Global  

Find out how the IFOPA is empowering patients and accelerating advancement toward treatments and a cure for FOP through the international patient registry.

Drug Development Forum Wrap-Up
 

Get all the details on the most recent Forum held in Boston. See photos from the event, get a wrap-up of Forum outcomes and take a look at the academic institutions and pharmaceutical companies that attended. 

Giving Tuesday
The IFOPA Makes Giving Easy

Give some thought to these creative and helpful ways to include IFOPA in your holiday preparations.

Learn More >
2016 Competitive Research Grant Awardees Announced

See who this year's recipients are and learn more about the critical research they'll conduct. 

Read More >

Midwest Gathering Draws FOP Community to St. Louis

Fifty individuals with FOP and their families joined to share stories, catch up and build new friendships. See photos from the event and revisit Dr. Kaplan's inspiring words from the first morning of presentations.

Read More > 
November is National Family Caregivers Month

Did you know that November is a special month celebrating family caregivers under the theme 'Take Care to Give Care'?  We in the FOP community know how incredibly special family caregivers are. Caring for Rare Disease Caregivers, sponsored by the Caregiver Action Network, is a great resource to check out this month and any time you need support. Of note, information is available in English, Spanish, German, French and Portuguese.

On Nov. 22, 2016 at 1pm ET/10am PT members of the FOP community are welcome to attend the free Global Genes webinar, "Transition of Care: Planning for Care for Children with a Rare Disease." Register Now! If you can't attend the webinar at its designated time, be sure to register to receive a recorded version when it becomes available. 

The IFOPA Gives Thanks for YOU!

In this season of counting our blessings and drawing our families near, the IFOPA is grateful to count you among our FOP family. Thank you for everything you do to help us move toward safe, sustainable treatments and, one day, a cure. Happy Thanksgiving!
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