Topic: RARE - the documentary
I have taken this from Sharon Terry's mail (Genetic Alliance) and am wondering whether someone in the Seattle area (or beyond) is interested in attending this showing.
Maren Monsen’s movie “Rare” is going to be screened at Seattle Children’s Hospital/Research Institute as part of Holly Tabor's bioethics film series. Two local geneticists/genetics researchers are part of the panel, they would love an individual or family who might also be willing to participating and talking about the issues in the film? Unfortunately, they do not have a budget to pay anyone, but they can buy them lunch and pay for parking. Holly really thinks the family/advocacy perspective would be really important to have as part of the discussion.
The movie follows Hermansky Pudlak Syndrome, and Holly wants to use it as a springboard to educate her folks about all rare diseases – so any rare disease person or family is fine
I believe that this particular invitation would help us gain attention given to the disease of Cholangiocarcinoma.
Please contact me, email@example.com for further instructions.
Thanks for considering,