Christine Von Raesfeld π Email and Phone Number
Few people with a cause walk the talk as boldly and graciously as Christine Von Raesfeld, Christine is a pillar of patient advocacy and allyship in the rare and chronic disease community. Through the lens of her lived experiences in healthcare, she has become a champion for patient voices, diversity and inclusion in clinical research, and equitable patient-sponsor partnerships.Β Christine has brought her unique perspective and honed expertise to countless roles as a featured speaker for numerous conferences on topics ranging from clinical trial recruitment to data & digital rights, from a true patient perspective. She serves as an e-patient scholar with Stanford MedicineX and a Committee Member with the Partnership for Quality Measures (CMS) among other roles. Wherever possible, Christine generates momentum toward progress along her patient advocacy jouney and has become a thought leader worldwide, stimulating dialog on a range of topics relevant to patients, clinicians, and industry.Β Β As a patient advisor, Christine has assisted several initiatives including the Stanford "Humanwide" Precision Medicine Program and the NIH All of Us Research Program and serves as a board member/advisor to multiple organizations and startups. She helped to co-author the patient-led AI Rights Initiative with the Light Collective and focuses on data/digital rights and personalized/precision medicine. For her many contributions to her field, she has been named one of the top 100 Women of Influence by Silicon Valley Business Journal, Silicon Valley Community Hero, a member of the 2021 HIMSS Future50, and one of Medika Life's 50 most influential voices in healthcare.
The Light Collective
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Co AuthorThe Light Collective Sep 2023 - PresentHelped to draft the first ever patient-led framework for AI Rights as part of a Light Collective cohort. -
Board MemberThe Light Collective May 2022 - PresentNo Aggregation Without Representation.We are on a mission to represent the collective rights, interests, and voices of patient communities in healthcare technology. -
Strategic AdvisorResearch To The People Mar 2023 - PresentPalo Alto, California, Us- Collaborate with researchers, clinicians, and other stakeholders to identify the unmet needs and challenges of patients with rare and undiagnosed diseases- Provide insights and feedback on the design, implementation, and evaluation of research projects and clinical trials that aim to improve diagnosis, treatment, and quality of life for patients with rare and undiagnosed diseases- Advocate for the rights and interests of patients with rare and undiagnosed diseases and raise awareness of their issues among the public, policymakers, and media- Participate in educational and outreach activities to promote the value and benefits of sharing data and engaging in research and clinical care for rare and undiagnosed diseases -
Prmr/Msr Committee MemberPartnership For Quality Measurement (Pqm) Nov 2023 - PresentAs a part of this advisory group, our role is to delve into preliminary assessments, evaluate measures, and contribute insights that drive #discussions within the broader committee as to whether these measures should be considered for adoption into select programs by the Centers for Medicare & Medicaid Services -
Leadership CouncilCns Summit Jan 2023 - PresentBoston, Ma, UsThe CNS Summit is a community of innovators and industry leaders who are not afraid to challenge the status quo. The CNS Summit annual meeting convenes 1000+ decision-makers from organizations involved in life science clinical development & healthcare innovation, as well as regulatory authorities, investigator sites, and CRO/service companies. -
Participant Ambassador (National)All Of Us Research Nih Jun 2022 - PresentMember of PAB (Participant Advisory Board). Have input on AoURP protocols, procedures, communications, and imagery. Provide feedback on tools, processes, and applications. Also participated in AoURP Workgroups, Committee for Access Privacy and Security (CAPS) and the Rare Disease subcommittee
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Founder/CeoPeople With Empathy Mar 2020 - PresentPeople with Empathy is a platform to connect key stakeholders in healthcare in order to improve the quality of life for patients and Care partners. -
Advisory Board MemberConsuli_Inc. Mar 2022 - PresentSan Diego, Us -
Moderator/HostConsuli_Inc. May 2020 - PresentSan Diego, UsCo-moderator and host for Consuli conversations "One Burning Question (OBQ) and "Data Dignity" aimed to address topics related to clinical trials and data sovereignty. -
Participant Center Virtual Advisory Team (Vat)All Of Us Reasearch Program , Nih Jul 2020 - PresentVolunteer advisory team member
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E-Patient ScholarStanford Medicine X Aug 2019 - PresentStanford, Ca, UsEngaged in the Stanford Medicine X ePatient Scholar program, Advocate for patient-centered care, diversity, and inclusion in clinical research. Collaborate with up-and-coming medical students through the SASI summer internship capstone projects. -
Member Of Community Congress (Regulatory Policy)Everylife Foundation For Rare Diseases Feb 2018 - PresentWashington, District Of Columbia, Us -
Patient AdvisorPatientslikeme Dec 2017 - PresentBoston, Massachusetts, UsA patients-only group that collaborates with the company on new research and product development, advocates on behalf of patients, and provides real-world perspectives to industry and PatientsLikeMe partners. Worked closely within the DigitalMe program. -
Rare Disease AdvocateRare Disease Legislative Advocates (Rdla) Aug 2017 - Present
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Speaker/ModeratorFreelance Jan 2017 - PresentSpeaker at multiple industry events, providing a unique patient perspective on topics ranging from recruitment/retention to data/digital health, with a focus on personalized and precision medicine.
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Patient AdvocateWego Health Jun 2016 - PresentBoston, Massachusetts, Us -
AdvisorTelemedicx May 2022 - Jun 2023Honolulu, Hawaii, Us -
Steering Committee MemberEyeforpharma May 2018 - Jan 2023London, Gb -
Advisory Board MemberJeeva Informatics Solutions Inc. Aug 2021 - Jul 2022Manassas, Va, UsThe Human-Centric PlatformThe Jeeva eClinical Cloudβ’ was developed by researchers with empathy who listen and learn to help clinical researchers, hospital sites, academic medical centers, CROs, and biopharmaceutical sponsors accelerate patient enrollment by 3x faster. Jeevaβs flexible & modular bring your own device (BYOD) solution works on any browser-enabled mobile device & saves >70% logistical burden on study teams and patients. Our modular Software as a Service (SaaS) subscription model helps clinical researchers manage a clinical studyβs annual budget on a simple per participant basis.Learn More -
Patient SpecialistThe Considered Aug 2021 - Jul 2022Bringing the Patient Perspective and insight to the world of Healthcare Marketing in collaboration with People with Empathy. -
Moderator/Host/Patient PerspectiveHealth.Reconsidered Apr 2021 - Jul 2022New York, UsAdvancing the debate, addressing the inequalities and celebrating the innovations and individuals in healthcare. Join the conversation at https://www.clubhouse.com/club/healthreconsidered M-F 7am PT/10am ET/3pm UK/4pm CET -
Freelance WriterBionews Services 2017 - Jul 2022Pensacola, Florida, Us -
Technical Expert PanelistCenters For Medicare & Medicaid Services May 2020 - May 2022Baltimore, Md, UsVolunteer Technical Expert Panelist on Reevaluation of Total Hip and Knee Arthroplasty Outcome Measures -
Board MemberMore Than Lupus Jan 2019 - Jul 2020Independent Patient Advocate
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Patient AdvisorAurinia Pharmaceuticals Inc Jun 2017 - Jun 2020Edmonton, Alberta, Ca -
VolunteerLupus And Allied Diseases Association, Inc. Jan 2019 - May 2020Verona, New York, Us -
Patient LiaisonLupus Foundation Of Northern California Jun 2018 - Dec 2018San Jose, California, UsAs patient liaison, I coordinate activities and events with the LFNC and our patient community. I also host their live #Lupus1O1 chat series on Facebook. -
Volunteer Patient Education Instructor, Patient AdvocateLupus Foundation Of Northern California Nov 2015 - Dec 2018San Jose, California, Us -
Social Media DirectorLupus Foundation Of Northern California Sep 2015 - Oct 2018San Jose, California, Us -
AmbassadorCureclick May 2017 - Dec 2018Costa Mesa, Ca, UsCureClick is a unique platform that works with patient activists to spread awareness and understanding of clinical trials
Christine Von Raesfeld π Skills
Christine Von Raesfeld π Education Details
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San Jose City College -
Mission CollegeAssociate Of Arts - Aa -
Santa Clara High SchoolGeneral Studies -
Mission CollegeGeneral Studies
Frequently Asked Questions about Christine Von Raesfeld π
What company does Christine Von Raesfeld π work for?
Christine Von Raesfeld π works for The Light Collective
What is Christine Von Raesfeld π's role at the current company?
Christine Von Raesfeld π's current role is Connector | Storyteller | Patient Perspective | Precision Medicine | Personalized Care | HIMSS #Future50 | Medika Life 50.
What schools did Christine Von Raesfeld π attend?
Christine Von Raesfeld π attended San Jose City College, Mission College, Santa Clara High School, Mission College.
What are some of Christine Von Raesfeld π's interests?
Christine Von Raesfeld π has interest in Psychology, Social Services, Children, Social Media, Medical Studies, Digital Photography, Arts And Culture, Health.
What skills is Christine Von Raesfeld π known for?
Christine Von Raesfeld π has skills like Microsoft Excel, Sales, Nonprofits, Project Management, Social Media, Customer Service, Management, Team Building, Leadership, Microsoft Office, Event Planning, Training.
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