RNE SURVEYS
RNE has been distributing a series of surveys to compile information for initiatives to assist the rare community. Please help by answering these quick questions. All is anonymous.
PLEASE SHARE and encourage others to participate. Thank you!
Rare Disease patients, caretakers, and those treating these families may feel frustrated when they assume inadequate research is being done in this devastating group of disorders. In fact, several initiatives exist through government programs, drug trials, and patient advocacy organization efforts to find treatments and cures for rare disorders. There are working groups formed to discuss societal obstacles that prevent the rare patient from attaining better quality of lives.
Please click on the link above to share your thoughts about research and drug studies. Thank You!
Support strategies are often implemented into care plans for patients and families affected by rare and complex disorders. Support can come in many ways, from a listening ear and offering understanding, to taking responsibility for care decisions, to being physically available to do chores and errands for the family affected. How important is support to the patient and family on the receiving end?
Please help RNE's research by taking a few minutes to answer the following survey questions. All answers are confidential. Thank you!,
Many rare disease patients and families face obstacles to obtaining proper medical care. They must maneuver through a complex medical system poorly designed to embrace needs of the patient with patients and families face obstacles to obtaining proper medical care.
RNE is supporting the initiative to establish a Complex Disease Diagnostic and Care Clinic at MGH, Boston, under direction of Amel Karaa, MD. This clinic is aimed to be built around needs the patients express as important. Now is our opportunity to speak up.
Please answer this quick survey by clicking on the above link. Thank you!
CLOSED SURVEY - due to maximum participants
Please click on above duplicate!
Over the past decade, increasing anecdotal evidence in the rare disease community suggests that patients with rare diseases experience disproportionately high levels of misdiagnosis of non-organic illnesses such as Munchausen’s Syndrome By Proxy, Conversion Disorder, and Somatoform Disorder, and that these misdiagnoses interfere with the ability of rare disease patients to access appropriate medical care.
The first step is to establish the problem as more than anecdotal but we need the rare community's help for this.
Please take this short, anonymous survey to assist us in gathering information. Thank You!
Open Survey
RNE had an overwhelming response to the recent survey, "Misdiagnoses in the Patient with Rare and Complex Disorders". (See below) Since we have reached maximum participants, we have decided to duplicate the survey to provide opportunity for those who have been attempting participation. This issue is obviously a priority in the rare community.
Please, only take this survey if you have not already taken the first version.
Thank you!
CLOSED SURVEY - due to maximum participants
We may all know or assume that living with a rare disease is difficult. Since there are still so many holes to fill before we will find adequate treatments and cures for many disorders, sometimes all we have to offer patients is guidance toward resources that make all stakeholder’s lives easier to manage. Some services directly help a patient or caregiver while some are focused on providing information to clinicians that gives them a better understanding of a disease and leads to improved patient care.
There are many resources in place through entities devoted to improving lives in the rare disease community. They can be found through advocacy organizations, patient groups, state and federal agencies, community programs, regional organizations, various industry educational offerings, and even bio-pharmaceutical companies, compounding centers, pharmacies, and nutritional support companies.
All of these options have something to offer, whether toward a patient or through info provided to a clinician. Knowing about and utilizing these resources helps improve quality of lives for patients much more quickly.
RNE knows medical teams are very busy providing needed medical care to complicated rare disease patients and time may not be much available for sharing in the many available resources for patients and families. We would like to help both, medical teams and patients/families in this area and are investigating ways to find solutions.
