See what this selection of Friends are doing..
Friend of Rare Disease Day
Mara University of Technology Malaysia
Description of the activity:
We wish to spread awareness on this matter inside our university campus starting with our own media faculty under the guidance of your organization.
Contact person:
Assoc. Prof. Dr. Mohd. Adnan Hashim
Website:
http://melor.uitm.edu.my/uitm/
Description of organiser:
Other
Country:
Friend of Rare Disease Day
Univ. Bern, Dpt. Clinical Research, Channelopathy lab
Description of the activity:
Since I am the director of the dept. for clinical research of one the largest Swiss University Hospital, I am considering to organize a Rare Disease event in 2011.
Best regards, H. Abriel
Contact person:
Hugues Abriel
Website:
www.ionchannels.dkf.unibe.ch/
Description of organiser:
Researcher
Country:
Friend of Rare Disease Day
Stichting Diagnose kanker / Rondom kanker
Description of the activity:
Asking special attention for rare genetic syndromes following by cancer, like the Li-Fraumeni syndrome
See also www.li-fraumeni.nl
Contact person:
Tom van der wal
Website:
www.diagnose-kanker.nl
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Schattdecor AG
Description of the activity:
a
Contact person:
Harry Purainer (CFO)
Description of organiser:
Select a role that best describes you
Country:
Friend of Rare Disease Day
PRIP Tokyo
Description of the activity:
We will held “Rare Disease Day” event in Japan as well in order to raise awareness for rare and intractable diseases.
Contact person:
Yukiko Nishimura
Website:
http://www.prip-tokyo.jp/ja/index.html
Description of organiser:
Other
Country:
Friend of Rare Disease Day
VU University Medical Centre
Description of the activity:
Orphanet NL will be present at the Dutch Rare Disease day with two persons (Judith Carlier and Petra van Overveld), where they have a stand and will show the activities of Orphanet NL and give possibility to enter new activities.
Contact person:
prof. Martina Cornel
Website:
www.emgo.nl/personal_pages/profile/index.asp?id=269&page=1
Description of organiser:
Researcher
Country:
Friend of Rare Disease Day
ASEM (asociación enfermedades neuromusculares)
Description of the activity:
Familiar de paciente con una miopatía mitocondrial.
Contact person:
MARIA COMA
Description of organiser:
Patient
Country:
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