PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV

1,232 Supporters

Through the following efforts, PANDORA seeks to alleviate the suffering caused by NeuroEndocrineImmune diseases, including ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), fibromyalgia (FM), multiple chemical sensitivities (MCS) or environmental illnesses (EI) and chronic Lyme disease, Gulf War illnesses (GWI):

Advocacy for improving patient quality of life Community awareness projects Patient education programs and conferences Physician education programs Research grants Partnerships with other patient organizations Collaborations with academia and the biotech industry

PANDORA advocates for and works toward establishing centers of excellence for research, clinical care, physician education and government services assistance for NEIDs patients and their families.

 

Vision

PANDORA’s vision is to restore the quality of life for people with NeuroEndocrineImmune diseases (NEIDs).

Core Values

Create hope for a cure Strongly advocate for healthcare changes Empower patients through education Promote collaboration as a bridge organization

It is a terrible thing to see and have no vision. - Helen Keller

 

Started 1 petition

Victory
Petitioning Thomas Frieden, M.D., M.P.H.

Tell CDC to Change their ME/CFS Research

A new chief of the Viral Diseases Branch of the Centers for Disease Control and Prevention provides an opportunity for that government agency to change the direction of ME/CFS research. Yet, they need to know what changes are needed. On Dec. 6, PANDORA sent a letter to Dr. Elizabeth Unger who is now heading up ME/CFS research for the CDC. The letter contains solid and strong recommendations that are based in a consensus of patient organizations, experts in the field of ME/CFS and advocates.  Also, at the CDC Stakeholder's meeting on April 2009, these same solid and strong recommendations were made. This letter included the signatures of ten other patient organizations:The Vermont CFIDS Association, Inc.CFS Knowledge CenterRocky Mountain CFS/ME & FM AssociationMassachusetts CFIDS/ME & FM AssociationMothers Against Myalgic EncephalomyelitisCFS/FMS Organization of Georgia, Inc.CFS Solutions of West MichiganWisconsin ME/CFS Association, Inc.Medical Professionals with METhe Connecticut CFIDS & FM Association, Inc.It also included the signatures from noted patient advocates, such as Robert Miller, Heidi Bauer, Jill Justiss and Jim, Billie and Eric Moore.Now it is your turn. If you agree that the CDC needs to make the changes listed in the letter, sign this petition. Each signature results in an e-mail being sent to Dr. Unger’s bosses, urging them to direct her to implement the changes:Stephan Monroe, Ph.D., Director of the Division of High Consequence Pathogens and PathologyBeth Bell, M.D., M.P.H., Director of the National Center for Emerging Zoonotic Infectious DiseasesRima Khabbaz, M.D., Deputy Director for Infectious DiseasesIleana Arias, Ph.D., Principal Deputy Director for the CDCThomas Frieden, M.D., M.P.H., Director for the Centers for Disease Control and PreventionAlso, an e-mail will be sent to:Dinah Bembo, Assistant to the Assistant Secretary of Health  

PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV
1,232 supporters