Dear friends, fellow patients and advocates,
For those who have been following or participating in international research projects it is virtually impossible to comprehend the poor understanding of Neuro-Immune Illnesses in Europe. Most patients in Europe are not even aware there might be a biomedical cause for their illness or of the relationship between various chronic illnesses, as they are struggling to cope with the limitiations of their illness in daily life after being rejected by mainstream medicine. Another factor is the language issue, as many patients are not able comprehend research papers and press releases written in English.
Without discrediting their intelligence, I doubt we can afford to wait until those patients are getting up to speed in their own pace so they can start raising awareness themselves, which is why I believe it is the responsibility of everyone who IS aware to help those who cannot help themselves in this respect.
Simply stated: Entire countries have been indoctrinated into the psychological beliefs regarding these illnesses and it will take quite an effort to change this around. By increasing international awareness amongst patients, relevant parties and the general public, ultimately more funds will become available for biomedical research. Patients are depending on more research, clinical trials, on more official publications and on research and advocacy to unite globally in order to improve their quality of life.
In the mean while patient advocates in Europe are gathering news, translating information and are launching national awareness campaigns to provide patients with information and to increase awareness in their countries. Diagnose Support has issued a petition to help improve the situation for patients in The Netherlands. (Diagnose Support is not bound to one country but we can only setup a petition in the country we reside.) Our country has the potential to play an important role in biomedical research.
International signatures are accepted, please put in the effort to sign the petition. Instructions in English to guide you through the Dutch text (and the TWO steps in the proces) and a google-translation can be found at our website.
As the petition is set up by patients, we are open to receive complimentary letters (via email) to submit to our government representative along with the petition to ensure all relevant matters are included.
Please email Diagnose Support if you experience technical or language difficulties when signing the petition. When nothing else works, Diagnose Support can sign your name on your behalf after receiving email authorization to do so.
Feel free to forward this message in your network.
Thank you for your time,
Carla,
Diagnose Support
Petition: http://www.petities.nl/petitie/erkenning_van_en_biomedisch_onderzoek_naar_neuroimmuun_ziekten/
Translation: http://diagnosesupport.com/main/content/view/199/162/
Instructions: http://diagnosesupport.com/main/content/view/200/162/
.
For those who have been following or participating in international research projects it is virtually impossible to comprehend the poor understanding of Neuro-Immune Illnesses in Europe. Most patients in Europe are not even aware there might be a biomedical cause for their illness or of the relationship between various chronic illnesses, as they are struggling to cope with the limitiations of their illness in daily life after being rejected by mainstream medicine. Another factor is the language issue, as many patients are not able comprehend research papers and press releases written in English.
Without discrediting their intelligence, I doubt we can afford to wait until those patients are getting up to speed in their own pace so they can start raising awareness themselves, which is why I believe it is the responsibility of everyone who IS aware to help those who cannot help themselves in this respect.
Simply stated: Entire countries have been indoctrinated into the psychological beliefs regarding these illnesses and it will take quite an effort to change this around. By increasing international awareness amongst patients, relevant parties and the general public, ultimately more funds will become available for biomedical research. Patients are depending on more research, clinical trials, on more official publications and on research and advocacy to unite globally in order to improve their quality of life.
In the mean while patient advocates in Europe are gathering news, translating information and are launching national awareness campaigns to provide patients with information and to increase awareness in their countries. Diagnose Support has issued a petition to help improve the situation for patients in The Netherlands. (Diagnose Support is not bound to one country but we can only setup a petition in the country we reside.) Our country has the potential to play an important role in biomedical research.
International signatures are accepted, please put in the effort to sign the petition. Instructions in English to guide you through the Dutch text (and the TWO steps in the proces) and a google-translation can be found at our website.
As the petition is set up by patients, we are open to receive complimentary letters (via email) to submit to our government representative along with the petition to ensure all relevant matters are included.
Please email Diagnose Support if you experience technical or language difficulties when signing the petition. When nothing else works, Diagnose Support can sign your name on your behalf after receiving email authorization to do so.
Feel free to forward this message in your network.
Thank you for your time,
Carla,
Diagnose Support
Petition: http://www.petities.nl/petitie/erkenning_van_en_biomedisch_onderzoek_naar_neuroimmuun_ziekten/
Translation: http://diagnosesupport.com/main/content/view/199/162/
Instructions: http://diagnosesupport.com/main/content/view/200/162/
.