In thisconversation, Pam Cusick of Rare Patient Voice discusses the importance ofpatients participating in market research and clinical trials. With over 1400conditions currently represented, Rare Patient Voice welcomes everyone who iswilling to participate. The conversation also touches on the challengespatients face when seeking medical attention and how Rare Patient Voiceempowers patients by connecting them with opportunities to share theirexperiences and make things better for themselves and others. With some partsof trials being done at home or via Zoom, patients have opinions aboutparticipating in these studies from the comfort of their own homes. Overall,Rare Patient Voice values patient input and seeks to provide opportunities forpatients to have a voice in shaping healthcare decisions. Learn more about howto become a member of Rare Patient Voice's research panel atwww.rarepatientvoice.com

Chapters:

00:00:00 Introduction To Pam HandAnd Rare Patient Voice

00:03:41 Rare Patient Voice's InvolvementIn Over 8000 Projects

00:05:56 Perceptions Of ClinicalTrials Among The Public

00:09:27 Support For Patients InClinical Trials.

00:11:39 Need For An Airline ForPatients With Challenges

00:14:04 Empowering PatientsThrough Sharing Experiences.

00:18:03 The Importance Of PatientInput For Effective Solutions

00:22:34 The Importance Of SupportGroups For Patients And Caregivers

00:23:56 The Importance OfCaregiver Perspective In Research On Alzheimer's Dementia.

00:28:37 A Little Person's CancerStruggle And The Importance Of Persistence.

00:30:11 The Frustration OfMisdiagnosis And Patient Empowerment

00:34:07 Lack Of Awareness On TheBenefits Of Advocacy Groups

00:37:51 Constantly Changing ListOf Requested Disease Areas For Medical Research

00:41:56 Patient Inquiries AboutResearch Results

Key Takeaways:

1. Advocacy groups can be helpfulin pulling together information for research, but patients should also do theirown research.

2. A study found that over 50% ofpatients and caregivers surveyed were not working with an advocacy group.

3. Rare Rare Patient Voicewelcomes everyone and has over 1400 represented conditions.

4. Patient Voice conducts internalstudies to keep patients engaged and shares the results with them, but it isuncommon to receive results from studies they are involved in.

Resources:

Connect with Laura

Email: [email protected]

Website:www.desperateforadiagnosis.com

YouTube:https://www.youtube.com/@desperateforadiagnosis

Facebook:https://www.facebook.com/DesperateForADiagnosisPodcast

LinkedIn:https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

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