rarediseases.org

curefop.org

Information for Recent Diagnosis

http://curefop.org/recent-diagnosis.html

Information for Recent Diagnosis. If you or a family member has just received a diagnosis of fibrodysplasia ossificans progressiva (FOP), you will have plenty of questions. The IFOPA provides information on this site that should help answer many of them. Remember that you are not alone. Please take some time to navigate the site for information about FOP and to find support for the days ahead. You may need time to adjust to the new diagnosis, so educate yourself about FOP- slowly. Clementia Phase 2 Trial.

curefop.org

Information for Healthcare Professionals

http://curefop.org/health-professionals.html

Information for Healthcare Professionals. To help healthcare professionals become familiar with FOP, we offer the following references. The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations. Helpful Contacts and Addresses. Videos: FOP Fact and Insights. For additional information, please contact the IFOPA. Office directly or contact the IFOPA's medical advisor, Frederick S. Kaplan, M.D. Clementia Phase 2 Trial. Helpful Articles and Essays. Donate to the IFOPA.

curefop.org

Emergency Medical Information/Treatment Guidelines

http://curefop.org/treatment-guidelines.html

Emergency Medical Information/Treatment Guidelines. FOP is accelerated by trauma. Including intra muscular injections) so handle the patient gently at all times and prevent falls. Evaluate the emergency and protect the life of the patient as if FOP were not an issue. FOP itself rarely causes an emergency. Follow these emergency guidelines at all times, if time permits, consulting of expert doctors is strongly recommended regarding potential risks of any surgical or medical interventions being considered.

curefop.org

Information for Students

http://curefop.org/for-students.html

To help students become familiar with FOP or gather information for reports and papers, we offer the following references. Clinical Reviews in Bone and Mineral Metabolism. For additional information, please contact the IFOPA office directly or contact the IFOPA's medical advisor, Frederick S. Kaplan, M.D., or his assistant Kay Rai at the University of Pennsylvania School of Medicine at 215-349-8726 or via email. Clementia Phase 2 Trial. Helpful Articles and Essays. Catalog of FOP Resources.

curefop.org

FOP Symptoms

http://curefop.org/symptoms.html

Fibrodysplasia ossificans progressiva (FOP) often begins in the neck and shoulders and progresses along the back, trunk, and limbs of the body. In addition, malformed big toes (short, bent, and sometimes curved inward) are always associated with the condition and can be observed at birth. While the toe malformations cause few problems, they serve as an important early sign of FOP before the onset of extra bone. Symptoms of FOP, including bone formation, usually begin during the first two decades of life.

curefop.org

Information for Donors

http://curefop.org/information-for-donors.html

Betty Anne Laue/IFOPA Resource Center. Board of Directors and Officers. On behalf of the IFOPA Board of Directors and our President and Founder, Jeannie Peeper, I encourage your continued involvement and support. Please review our financial, programmatic and special event information contained on our website. Together, we can find an effective treatment and eventual cure. To view the IFOPA's Financial Information, click here. Clementia Phase 2 Trial. Helpful Articles and Essays. Catalog of FOP Resources.

curefop.org

Clementia Phase 2 Palovarotene Clinical Trial

http://curefop.org/drug-development/clementia-palovarotene-clinical-trial.html

Clinical Trial Latest News. Clementia Phase 2 Palovarotene Clinical Trial. Clementia Clinical Trial and Study FAQs. Clementia FOP Natural History Study. Clementia Pharmaceuticals, Inc. Clinical Trial General Information. Clementia Phase 2 Palovarotene Clinical Trial. Phase 2 Extension Study. Click on www.clinicaltrials.gov. And in the Search Studies box, enter identifier NCT02279095. You can go directly to the Phase 2 Extension Study by clicking. Phase 2 Clinical Trial Frequently Asked Questions.

wylderjames.com

Shunt Replacement |

http://wylderjames.com/home/current-happenings/shunt-replacement

Doc and Alexa’s Wedding. Mom’s 30th Birthday. Wylder’s Second Birthday. Dad’s 30th Bday/Sedona Trip. Cole’s AZ Trip. You Helped Us Celebrate! Wylder’s Third Birthday. 4th of July 2012. You are here: Home. We spent about 12 days int eh PICU for this and were very excited to get Wylder home sweet home. 3rd Annual Living Like A Warrior Gala. CLICK BELOW FOR YOUR GALA TICKETS TODAY. Meet Wylder the Whale. Get Wylder’s books HERE. Enter Your Email Address…. Subscribe to Wylder's Updates by Email.

thelamfoundation.org

About Us | About The LAM Foundation

https://www.thelamfoundation.org/about-lam-foundation

LAM Liaison Patient Network. LAM Patients, Family and Friends. LAM Liaison Patient Network. Friend and Family Assistance. Worldwide LAM Patient Coalition (WLPC). Current Trials and Studies. Clinical Representation and Course of LAM. ER Medicine Quick Facts. Educational Materials for Patients. Current LAM Scientific Articles. Current Trials and Studies. Scientific Meetings and Conferences. LAM Grant Programs Overview. LAM Biomarker Innovation Summit Grants. UPENN Orphan Disease Program Grants. The LAM Fou...

erdheim-chester.org

Treatments

http://erdheim-chester.org/treatments

New ECD trials opening! Follow the link below for "Clinical Trials for ECD Treatment" to learn more about the new trials accepting ECD patients. How is Erdheim-Chester Disease Treated? Because of the rarity of this disease, clinical trials. Interferon-alpha, normally considered the “first-line” of treatment, with a number of papers available in www.pubmed.gov. For more papers describing interferon treatment for ECD, see the Technical Papers. BRAF-inhibitors (vemurafenib, dabrafenib). Is now open in the U...