Notices include announcements from MDS members and from nonprofit organizations with news of interest or a call for action (research, patient activities, scholarships, studies, etc.).
Looking for patients with chorea-acanthocytosis or McLeod syndrome
We are planning a patient/caregiver meeting in the US in 2016 for people affected by chorea-acanthocytosis or Mcleod syndrome.
If you have a patient with either of these neuroacanthocytosis syndromes who might be interested in attending, please ask them to email Ginger Irvine at the Advocacy for Neuroacanthocytosis Patients. As these are such rare conditions, we want to reach all who are affected in order to determine if there is interest. Any other questions, please email Dr. Ruth Walker at firstname.lastname@example.org.
Tourettes Action Offers Non-Financial Support to Researchers and Students for Studies
Interested in conducting Tourette Syndrome research? Tourettes Action (UK) offers non-financial support to researchers/research students wishing to recruit people for their research studies.
Tourette Syndrome is an inherited neurological condition causing involuntary and uncontrollable motor and vocal tics which can be painful, disabling and affect the quality of life of over 300,000 people in the UK.
There are many ways we can help to publicize your research project (newsletter, Facebook, Twitter, forums, email etc). Please contact Tourettes Action Research Manager Seonaid Anderson at Seonaid@tourettes-action.org.uk for more information.