NEWS AND ARTICLES 

 

The following video is from Peerview, a medical educational provider.  It brings up the importance of an emergency plan for our POH patients should they be in an emergency situation.  Do you have a plan?

Check out the next video in our #FibrodysplasiaOssificansProgressiva (#FOP) video series: “Patient and Caregiver Roles at the Center of the Multidisciplinary FOP Care Team” with Matthew T. Drake, MD, PhD. Produced with partners @PeerView, The @International FOP Association (IFOPA), and @The American Society for Bone and Mineral Research. Watch now! https://bit.ly/3QEWE6D #IFOPA #BoneDisease #FOPAwareness #CureFOP #Healthcare #MedEd

 

 

 

Here is a link to the video of Dr Fred Kaplan's and Dr Eileen Shore's POHA Symposium presentation.

https://drive.google.com/file/d/1ffZszRuW2blIU9v-NaGcGWA_eF58HzJA/view?usp=sharing

 

 

 

 

 

 

Thank you to all of our virtual attendees an speakers who shared in a day of learning from Dr. Fred Kaplan and Dr. Eileen Shore.  It was so nice to see our POHA familes from 5 countries and 12 states.  More details will be shared soon so please check back!

 

2021 Virtual Symposium

Please join us for a virtual sumposium on January 31, 2021 at 1:00 pm EST to 3:00pm.  Here you will hear from the world's leading researchers Dr. Frederick Kaplan and Dr. Eileen Shore.  There will also be breakout rooms for patients, parents and siblings.  Keep checking your email and Facebook for updates and registration information.

 

 

 

 

 

 

 

 

2016 SYMPOSIUM AND WINE TASTING FUNDRAISER

 

  2016 Symposium Families posing with Dr. Kaplan and Dr. Shore

Research News

You can read the Annual Reports of the POH Collaborative Research Project on the web

Volunteer

We may need help with translations so that all families can have access to information they understand.

Symposium

Eighty-five FOP families and nine POH families attended the Third International Symposium on FOP/POH, held November 2-5, 2000 in Philadelphia, PA.

Contact Us

We would love to hear from visitors to our web site. We invite you to contact us and complete the patient information form.

Fundraising

The POHA relies on donations and fundraisings events to help us reach our goals of sponsoring research and educating people about POH.

Click the Donate button to the left to make a donation to POHA or send it to the address below.

Progressive Osseous Heteroplasia Association
POHA
1460 Bolingbrook Drive
Columbus,Ohio  43228

Secondary location

517 Risley Road
Brigantine , NJ 08203

Updates

If you are not a member, we invite you to join the IFOPA. This organization represents FOP, the sister disease to POH. Research on both diseases is conducted in the same laboratory, directed by Dr. Eileen Shore and Dr. Fred Kaplan. You will receive "The FOP Connection a quarterly newsletter which provides research updates on both FOP and POH.

Click here to download the IFOPA Membership Form

News, Articles and Papers

Regeneron Announces Encouraging Garetosmab Phase 2 Results in Patients with Ultra-Rare Debilitating Bone Disease

02/29/2020 -

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Paternally Inherited Inactivating Mutations of the GNAS1 Gene In Progressive Osseous Heteroplasia

02/15/2011 -

EILEEN M. SHORE, PH.D., JAIMO AHN, PH.D., SUZANNE JAN DEBEUR, M.D., MING LI , B.A., MEIQI XU, B.S., R.J. MC KINLAY GARDNER, M.B., MICHAEL A. ZASLOFF, M.D., PH.D., MICHAEL P. WHYTE, M.D., MICHAEL A. LEVINE, M.D., AND FREDERICK S. KAPLAN, M.D.
N Engl J Med, Vol. 346, No. 2; January 10, 2002; www.nejm.org

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Perspective: Progressive Osseous Heteroplasia

02/15/2011 -

FREDERICK S. KAPLAN and EILEEN M. SHORE
Journal of Bone and Mineral Research; Volume 15, Number 11, 2000

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Progressive osseous heteroplasia: a distinct developmental disorder of heterotopic ossification. Two new case reports and follow-up of three previously reported cases

02/15/2011 -

FS Kaplan, R Craver, GD MacEwen, FH Gannon, G Finkel, G Hahn, J Tabas, RJ Gardner and MA Zasloff
J Bone Joint Surg Am. 1994;76:425-436.

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Diagnostic and Mutational Spectrum of Progressive Osseous Heteroplasia (POH) and Other Forms of GNAS-Based Heterotopic Ossification

02/15/2011 -

American Journal of Medical Genetics Part A 146A:1788–1796 (2008)

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