How to Educate Doctors About Rare Diseases
Educating doctors - How hard can it be?
Educating doctors - How hard can it be?
Educating doctors - How hard can it be?
Reaching Doctors - Online
Educating Doctors – Key Points 1. Know the community 2. Parents and patients 3. KOLs 4. Multiple channels 5. Things to avoid – assumptions 6. Specialists and specialty centers
Know the Community
Know the Community
Be Part of the Community
Educating Doctors – Key Points 1. Know the community 2. Parents and patients 3. KOLs 4. Multiple channels 5. Things to avoid – assumptions 6. Specialists and specialty centers
Parents and Patients
Educating Doctors – Key Points 1. Know the community 2. Parents and patients 3. KOLs 4. Multiple channels 5. Things to avoid – assumptions 6. Specialists and specialty centers
KOLs
Educating Doctors – Key Points 1. Know the community 2. Parents and patients 3. KOLs 4. Multiple channels 5. Things to avoid – assumptions 6. Specialists and specialty centers
Multiple Channels Website Email
Multiple Channels Social Media Conferences
Multiple Channels Newsletters Resource Guide Supplements
Multiple Channels – Patient Stories Website Partnering Conference Partners
Multiple Channels – Patient Stories Patient Magazines Email Print
Educating Doctors – Key Points 1. Know the community 2. Parents and patients 3. KOLs 4. Multiple channels 5. Things to avoid – assumptions 6. Specialists and specialty centers
Assumptions
Educating Doctors – Key Points 1. Know the community 2. Parents and patients 3. KOLs 4. Multiple channels 5. Things to avoid – assumptions 6. Specialists and specialty centers
Specialists and Specialty Centers
Specialists and Specialty Centers Resource Guide Resources • FDA • Global Genes • NIH • RareConnect • NORD • EURORDIS • Orphanet • CORD • UDN • Everylife Foundation • Find Zebra • RDLA • Genetic Alliance • Lysosomal Disease Network
Conclusions • Each rare disease is unique and requires unique way to educate doctors • Many resources are available to help • Do not waste doctors’ time • Do not waste patients’ time
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