Resources - are they being shared with you?

 

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.

We appreciate your feedback through this survey! Thank you!