W.I.R.C.

Wellness Institute for Rare Conditions

#WIRCforRare

WE VALUE:

OUR GOALS ARE TO:

RESEARCH PROGRAM GUIDELINES:

GRANT PROGRAM GUIDELINES:

  • Accurately diagnose patients suspected of having a rare genetic condition.
  • Identify effective treatment options and regimens for the diagnosed rare disease patient with an open mind to all scientific and medical philosophies.
  • Manage all diagnosed rare disease patients that do not have access to treatment/management at an established disease-specific center of excellence.
  • Provide assistance to NIH’s Undiagnosed Diseases Program (UDP) in order to avoid another backlog situation. Last year, the UDP stopped accepting patient applications in order to catch up with a backlog. While the program is now evaluating new cases, W.I.R.C. will provide patients with an alternative option to obtain the initiation of a diagnostic investigation by a team of qualified healthcare professionals either while they wait for their patient UDP application to be approved and/or should their application be denied. The UDP is a 4-year old program that has seen about 500 patients and has succeeded in making a full diagnosis of a genetic disease for about 10% of patients and a partial diagnosis for about 30%. The team at W.I.R.C. plans to assist the UDP program through positive collaborations aimed at increasing the UDP’s diagnostic rate and at assisting in the discovery of new diseases and disease mechanisms.

EDUCATIONAL PROGRAM GUIDELINES:

  • Provide grants that advance the rare disease community in the realm of patient advocacy, transportation assistance, lowering the burden of high medical costs, and therapeutic developments.
  • Provide grants that will encourage the development of more healthcare professional to develop an expertise within the realm of rare genetic diseases (through medical school scholarship awards).
  • Patients, their families and all members of the treatment team.
  • Attitudes that promote an environment where we all strive to improve and encourage innovative, “out of the box,” type of thinking.
  • The establishment of a unique healing institution focused on both the rare disease patients and the staff.
  • An emphasis on education and correcting misinformation for the patients, employees and the community as a whole.

CLINICAL PROGRAM GUIDELINES:

  • Discover new and innovative pathways, mechanisms, methods and solutions in biology and chemistry that may eventually provide a benefit for human health and wellbeing.
  • Identify unknown primary genes responsible for the presentation of rare genetic diseases.
  • Identify unknown pathology of rare genetic conditions.
  • Explore various treatment options, methods, and theories indicated for any rare genetic condition, disease, and/or syndrome.
  • Train future generations of scientists and researchers for a specialty in the study of rare genetic conditions.
  • Host educational and wellness seminars for health care professionals, patients, and the general population (i.e. Expanded Access Course for Physicians, Patient Advocacy Workshops hosted by Global Genes and EveryLife Foundation, Disease Specific Teaching Sessions/Workshops for healthcare professionals)
  • Establish educational classes that teach proper nutrition, wellness practices, and alternative therapeutic opportunities.
  • Establish an educational rare disease series introducing one rare genetic condition, disease and/or syndrome at a time, on a regular basis, specifically tailored to clinical professionals. While these classes will be open to all healthcare, clinical and medical professionals, those working out of W.I.R.C. will have a mandatory monthly minimum in order to remain in compliance with EDSers United’s standards.
  • Deliver comprehensive patient outcome-oriented care.
  • Contribute to the physical, psychological, social, emotional wellbeing of the patients, their families, and the rare disease community.
  • Continuously improve organizational performance.
  • Create effective networks through partnerships.
  • Strengthen relationships with universities, colleges, other medical institutions, pharmaceutical and biotechnology agencies, patient advocacy organizations, and the rare disease community.
  • Successfully develop and implement clinical, research, educational and grant programs.
  • Advance excellence in rare disease health services and education.
  • Foster a culture of discovery in all activities and support exemplary health scientific research.
  • Establish a healthy work environment ensuring staff’s commitment to excellence and leadership.
  • Build a work environment where each person is valued, respected and has an opportunity for personal and professional growth.
  • Demonstrate social responsibility through the just use of our resources.
  • Study the efficacy and safety of combining Eastern and Western (i.e. Pharmaceutical, Chinese, Ayurvedic, etc.) concepts for the treatment and management of rare genetic conditions.