How we can assist patients

Beyond the diversity of the diseases, rare disease patients and their families are confronted with the same wide range of difficulties arising directly from the rarity of these pathologies:

Barriers to quality care fall into a number of categories:    

 

  • Financial and economic

  • Language and cultural

  • Communication

  • Health care system

  • Transportation

  • Bias based on culture/race/age

  • Fear

Patient navigation helps ensure that patients receive culturally competent care that is also:

  • Confidential

  • Respectful

  • Compassionate

  • Mindful of the patient’s safety

  • Referral Pathways

  • Educational Material

  • Case Management

  • Patient Tools

  • Advocacy 

Our advocacy team support and promote patients’ rights as they navigate the health care system. Our Communication & Advocacy programs are premised on the idea that when people are empowered with the necessary knowledge and skills, they can change their lives for the better. Our programs work through interpersonal communication and mixed media to help community members learn the skills and information necessary to improve their own health.

We facilitate the following 3 key areas of patient navigation:

  • Interactions with medical professionals and funders.

  • Interpersonal interactions with family and friends.

  • Situations which test our ability to make aspects of care more dignified.

Treatment involves more than routine medical diagnosis, hospitalised care or even the prescription of drugs. When confronted by illness, patients seek professional help and advice from their doctors, and also rely on support from family members, peers and fellow patients. Patients’ with rare diseases are no exception to this reality. 

 

To this RDSA has created both general rare disease, as well as illness-specific objectives, online support groups as integral components of care for our patients and their families. These support groups may offer a variety of services, including educational materials, group therapy, team building activities, and other resources to provide support on how to cope and adapt to the lifestyle that is often dictated by their illnesses.

How we can assist Healthcare Professionals

Treatment of rare diseases is often a multi-disciplinary approach, and as such, connecting with other doctors and healthcare practitioners is often necessary to ensure overall patient care. We offer the following support to doctors:

  • Medical advisory boards

  • Clinical guidelines

  • Upcoming conferences  (events calendar)

  • Genetic Sample Logistics

  • Healthcare Professional network referral pathway

  • Case Management

  • Funder engagement

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