European CHM symposium autumn 2020 project: CHM2020.

The 4.European Choroideremia Patient Conference

Friday 02-10-2020 (14h00) – Sunday 04-10-2020 (14h00)

Location: Wilhelm Kempf House 65207 Wiesbaden. 

The venue is directly within reach of Frankfurt Central Station.

What is it about:

Choroideremia is a rare inherited disorder that causes progressive vision loss, ultimately leading to complete blindness. It is considered a rare disease because only 1 in 50,000 individuals is affected.
The first symptoms are generally night-blindness and intolerance to bright light, followed by vision loss in the mid-periphery. These “blind spots” appear in an irregular ring, only leaving patches of peripheral vision, while central vision remains maintained. Over time the disease leads to “tunnel vision” and eventually complete loss of sight.
The disorder is caused by a genetic defect of the X-Chromosome, which affects the retina. Thus typically only males will suffer the full effects of complete blindness, while females are carriers of the disease.

There is currently no cure for Choroideremia, but a Gene Therapy treatment is currently in Human Clinical Trials in Canada, Germany, United Kingdom and the United States.

The event:

Because of the lack of existing treatments and its rarity, one of the main priorities is to communicate about Choroideremia to support patient with genetic testing, information and enable more scientific research to be conducted. Nowadays, awareness keeps growing on a national level in many countries (United States, Spain, France, Germany, United Kingdom, Canada…) and partnerships are being created to accelerate the process.

As a result, we believe that now is the time to take the next step in our fight against Choroideremia. We want to organize an international conference to allow organizations worldwide to join forces in raising awareness and finding a cure. Our first step towards that goal is to organize a European conference from October 2nd to October 4th, 2020 in Wiesbaden in Germany.

Who we are:

Behind the organization of that conference, lie Three non-profit associations respectfully created by those affected and their relatives: PRO RETINA Deutschland e. V, France choroïdérémie and RETINA International

PRO RETINA Deutschland e. V. (website) is a German organization founded in 1977 to help people suffering from retinal diseases to get treated and/or find information and human support. It is considered the largest and oldest self-help association of people with retinal degeneration. The association handles over 30 different forms of retinal diseases, including Choroideremia.

France choroïdérémie (website) is a French organization founded in 2004 to provide individuals diagnosed with Choroideremia with information, hope and empathy. Slowly but surely, the young association managed to reach out to other associations across the world and participate in many seminars over the years.

Retina International (RI) is a patient-led, global, umbrella NGO for patient-led groups around the world focused on research and support for rare and common retinal diseases. Retina International has a Special Interest Group Choroideremia.

All organizations keep raising awareness and support scientific research by conducting charity events, seminars and conferences.

We need you:

To make this first European CHM symposium which will be available in three language, a success, we humbly request your attendance. We would really appreciate to welcome you as a speaker, sponsor, patient or family member on the event to share your knowledge on the matter.

Thank you for your time and support.

Mit freundlichen Grüßen
Best regards

Michael Längsfeld

Arbeitskreisleiter Chorioideremie der PRO RETINA Deutschland e.V.
Member of Board of Directors Choroideremia Research Foundation Inc, United States of America
Member of Management Committee Retina International, Dublin

Internet http://www.pro-retina.de/netzhauterkrankungen/chorioideremie
Internetcommunity www.rareconnect.org/en/community/choroideremia
Facebook www.facebook.com/groups/1388456481446308/?fref=ts,
Spenden an PRO RETINA
IBAN: DE60390500000007031131
SWIFT BIC : AACSDE33

Mail chm@pro-retina.de
Mail michael.laengsfeld@gmail.com
Mail michaellaengsfeld@curechm.org

What is the current state of research into, and development of a treatment of, Choroideremia?

In 2020, the PRO RETINA, France Choroideremia and Retina International will once again organize a conference for Choroideremia patients and people interested in the disease. The objective is to give an update on the research into new options regarding diagnosis and treatment.

Initial studies of a gene therapy have already been done worldwide. Gene therapy has already been applied in Germany.

We will also report on vision aids and counseling options. This is also an excellent opportunity to exchange experiences in dealing with the disease. Our speakers and moderators will be happily standing by to answer your questions and remarks.

Questions for the speakers can also be presented to the seminar leadership in advance, in writing. The leadership will make sure your questions reach, and will be answered by, the appropriate speaker.

Attendance costs amount to 100 EUR for members of PRO RETINA
Non-members and international guests can book an attendance ticket for EUR 75,00, accommodation can be booked separately in the H+ Hotel  Wiesbaden Niedernhausen https://h-hotel-wiesbaden-niedernhausen.hotel-mix.de/ , Flats till four persons are available at the MICADOR Appartmenthaus, Niedernhausen https://micador-appartementhaus-niedernhausen.hotel-mix.de/
Contact​​Michael Längsfeld, Telephone +49 170 2703637
E-MAIL chm@pro-retina.de
Internet www.pro-retina.de/chm<http://www.pro-retina.de/chm