Batten Disease Letter to MP
You may be aware that NHS England have recently announced that they will not be funding the drug which is used to treat the daughters of one of our school families. The BDFA is supporting this family and others who are affected by this terrible disease to overturn this devastating decision. If you would like to show your support, please use the template letter for MPs which you can download from the link below. You can find out more about this issue on the Nicole & Jessica’s Batten Journey Facebook page and this link is also included below.
Letter template: http://www.bdfa-uk.org.uk/who-we-are/brineura-for-cln2/rare-disease-day-template-letter/
Link to Facebook Page: Www.thenicoleandjessicarich.foundation