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Family Meeting Germany, 27-29 July

This year, at the invitation of the German FOP Association, Will, Janine and Luc Schroots attended the family meeting in Valbert. Upon our arrival, we were most heartily welcomed by Ralf and Regine Fischer. The temperature had by now gone up to 34 °C. It promised to be a warm weekend. The German FOP Association is celebrating its twentieth anniversary this year. After introductions and a meal, there was a short evening commemoration service in the chapel to remember Roger zum Felde and other FOP patients who have passed away. Later that evening, we traveled 20 years through time with the German FOP association watching a photo presentation ranging from quiet, reflective memories to happy, thankful experiences. We then have time to meet informally.

On Saturday 28 July, Ralf Fischer (Chairman) and Nadine Grossman (Vice-Chairman Elect) opened the day, with Nadine providing the English translation. All speakers and guests are welcomed most cordially. The meeting room has a display of group photos covering the past 20 years. Thankfully today is not as warm as yesterday, and finally at 9.30 the long-expected rain falls which affords some needed cooling.

Eileen Shore presented the results of the current FOP research at Pennsylvania University, including the effect of various conditions on bone formation in so-called FOP mice.

Stephanie Hoffman and Dr. Steffen Wahler of Clementia gave a detailed update on the palovarotene phase 3 Move trial. Patient inclusion in this trial has been stopped as the maximum of 80 subjects has been reached.

After lunch it is time for the group picture. The air is stuffy but thankfully it’s dry. Under the direction of Gilles Keller the pictures are taken. After he approves them, we continue the program.

A presentation by Dr. Oliver Semler on Arzneimittel Härtefallprogramm (compassionate use) follows. This is a program where patients with unfulfilled medical needs are given access to a medicine before it is made available in Germany. You must satisfy a number of conditions in order to enroll and register at a center participating in this program.

Then Dr. Marelise Eekhoof took the floor. Well-known to us all, Rolf Morhart provided the German translation. Marelise opened her presentation with a photo of the Hanze bike route connecting a number of cities in the Netherlands and Germany. She then reported on FOP activities in the Amsterdam Free University, including the annual patient day and clinical trials. She emphasized the importance of national and international collaboration. The Amsterdam Free University want Dutch FOP patients to have the opportunity to participate in every ongoing study.

Esmée Botman, physician-investigator, then reported on the Lumina 1 trial which started on 16 April in Amsterdam Free University. Patients, also those from abroad, come to the Amsterdam Free University for diagnostics and to participate in this trial.

She then asks Luc Schroots, FOP patient, a few questions. Luc started in this study in April. Questions like why he participates, what his experience is and what he sees as its importance. This leaves a deep impression on the attendees.

After the coffee break with lovely cakes and custard doughnuts, the floor was handed over to Dr. Dick Heinicke on the current aspects of pain therapy. He presented generally accepted alternative medical therapies such as the use of cannabis in addition to conventional pain control.

Prof. Petra Knaus and Susanne Hildebrandt presented news from Berlin Free University, including the role of cell receptor ACVR1 in the vascular inner wall and potential consequences in FOP.

Nadine Grossman gave a presentation on her studies at Berlin Charité University of a potential FOP biomarker.

In conclusion, Dr. Petra Seemann and Prof. Dr. Lutz Schomburg reported on the latest developments in the German FOP study group at Berlin Charité University.

Ralf Fisher closed this long warm day and it was time for dinner. After the meal all attendees reconvende in the meeting room and while enjoying a drink we sang a few songs. (Ralf says he would have loved to invite two Dutch female cello players to add to the ambiance.) The photo presentation of 20 years German FOP Association is played again. Many beautiful pictures were made by Gilles Keller, also an FOP patient. The temperature goes down significantly in the evening. Conversations continue late into the night. Esmée Botman finishes the painting of Roger zum Felde, where everyone painted a small piece. It turned out very nice.

On Sunday morning after breakfast we say goodbye to all our German FOP friends. It was wonderful to get to know this warm family.

Janine Schroots-Niepce

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