Communications
Communication Plan
Timeline:
- February – Rare Disease Day – Newsletter + Social Media Post – using tools and graphic from https://www.rarediseaseday.org/
- April – Spring Newsletter with Interview + pdf of Newsletter on Facebook
- May – May 20th BCM Awareness Day – Short Newsletter + Social Media Post
- August – Summer Newsletter with Interview + pdf of Newsletter on Facebook
- November – #GivingTuesday Campaign – Short Newsletter + Social Media Post – using tools and graphic from https://hq.givingtuesday.org/
- November – Thanksgiving – Short Newsletter + Social Media Post
- December – Holiday Newsletter with Interview + pdf of Newsletter on Facebook
Social Networks
Facebook BCMFF page – cover
Facebook BCM private group
X account – to be done
Instagram account
Linkedin account
BCMFF Newsletter
Newsletters’ Archive
2024
Rare Disease Day
Spring Newsletter
May 20th – BCM International Awareness Day & 10 Years of the BCMFF
BCMFF-Newsletter-2024-May20th-1
BCMFF-Newsletter-2024-May20th-2
Summer Newsletter
BCMFF Newsletter – 2024 Summer
Thanksgiving
#GivingTuesday Campaign
Holidays Newsletter
2023
Rare Disease Day
Charlotte April 29th 2023 Meeting
BCMFF-2023-Charlotte-Newsletter
Spring Newsletter
May 20th – BCM International Awareness Day
BCMFF-2023-May-20-Awareness-Day
Summer Newsletter
Registro – Do Something Great
Thanksgiving
#GivingTuesday Campaign
Venice April 9th Invite
BCMFF-Newsletter-2022-MeetingVenice
BCMFF-Newsletter-2022-MeetingVenice-2
Spring Newsletter – NO
May 20th – BCM International Awareness Day – NO
Summer Newsletter – NO
Charlotte 2022 Families Meeting
BCMFF-Newsletter-2021-MeetingCharlotte-1
BCMFF-Newsletter-2022-MeetingCharlotte-2
BCMFF-Newsletter-2022-MeetingCharlotte-3
BCMFF-Newsletter-2022-MeetingCharlotte4
Thanksgiving
BCMFF-Newsletter-2022-Thanksgiving1
#GivingTuesday Campaign
BCMFF-Newsletter-2022-GivingTuesday
Holidays Newsletter
BCMFF-2022-Holidays-Newsletter
2021
Rare Disease Day
BCMFF-Newsletter-2021-RRD-Oculisti
Spring Newsletter
May 20th – BCM International Awareness Day
Summer Newsletter
BCM Registry Campaign
Videogame call
BCMFF-Newsletter-2021-Videogame
Thanksgiving
BCMFF-Newsletter-2021-Thanksgiving
#GivingTuesday Campaign
BCMFF-Newsletter-2021-GivingTuesday1
BCMFF-Newsletter-2021-GivingTuesday2
Holidays Newsletter
BCMFF-Newsletter-2021-Holidays
2020
Rare Disease Day
Spring Newsletter
May 20th – BCM International Awareness Day
BCMFF-Newsletter-2020-Webinar1
BCMFF-Newsletter-2020-May20Webinar
BCMFF-Newsletter-2020-ArtContest
BCMFF-Newsletter-2020-ArtContestWinners
Summer Newsletter
Registry
BCMFF-Newsletter-2020-PatientRegistry
Thanksgiving
BCMFF-Newsletter-2020-Thanksgiving
#GivingTuesday Campaign
BCMFF-Newsletter-2020-GivingTuesday1
BCMFF-Newsletter-2020-GivingTuesday2
Holidays Newsletter
BCMFF-Newsletter-2020-Holidays
2019
Rare Disease Day
Spring Newsletter
May 20th – BCM International Awareness Day
Summer
Thanksgiving
BCMFF-Newsletter-2019-Thanksgiving
#GivingTuesday Campaign
BCMFF-Newsletter-2019-GivingTuesday
Registry
BCMFF-Newsletter-2019-PatientRegistryStart
BCMFF-Newsletter-2019-Registry-6Steps
BCMFF-Newsletter-2019-RegistryCampaign
Holidays Newsletter
BCMFF-Newsletter-2019-Holidays
2018
Spring
Mestre-Venice European Meeting
BCMFF-Newsletter-2018-MeetingMestre
Thanksgiving
BCMFF-Newsletter-2018-Thanksgiving
Holidays
BCMFF-Newsletter-2018-Holidays
2017
Spring
Atlanta Meeting
BCMFF-Newsletter-2017-AtlantaMeeting
Thanksgiving
BCMFF-Newsletter-2017-Thanksgiving
GivingTuesday
BCMFF-Newsletter-2017-GivingTuesday
Holidays
BCMFF-Newsletter-2017-Holidays
2016
BCMFF-Newsletter-2016-Holidays
List of Patients’ Interviews:
Robert Hicks
Jason Faulkner
Virgil Wade
George Donaldson
Oscar Dawson
Dean Monthei
David Dilling
Jameson Cavitt
Hawk Masters
Benedikt Romer
Kyle Bieze
Nacer Boussanohul
Oscar Wohlhfart
Paul Rowland
Robert Finch
Tom Rogers
Scientists interviews
Dr. J. Carroll – 2020 Summer – Holidays 2017
Dr. S.G. Jacobson – 2019 Summer
General Rules
1) For BCMFF logos and graphics refer to BCMFF graph designer, Emanuele de Bon. Email: emanuele.debon@gmail.com
2) For the figures to be used for the Newsletters – Spring, Summer, Holidays, we can use https://www.istockphoto.com/
Inclusiveness rules: avoid pictures that represent only the Catholic religion, both at Christmas and Easter, consider that in our community there are people who belong to different religions. Pictures of people, interviews and articles must respect and highlight multiraciality and gender equivalence.
3) The people we address are affected by BCM, so Newsletters and posts must meet accessibility and usability criteria – see Guide to Accessibility and Usability of the Web Interface for Blue Cone Monochromacy users.
4) We have sponsors, we currently receive the Otto per Mille from the Waldensian Church for funding the Patient Registry. Sponsors should be thanked and remembered in Newsletters and posts.
5) All interviews and the publication of personal data must be accompanied by the signature of an authorization – BCMFF Authorization and release1
6) “60 sec with…” interviews – texts and photos – need to be forwarded to Renata in order to be inserted in the web page.
7) A PDF copy of each Newsletter is kept among the Foundation’s documents, we must keep them between documents for 10 years.
8) Directors must approve newsletters and other communications/post/twitt before publication.
9) All clinical and scientific information needs to be reviewed by a Medical Doctor – this is a NORD requirement.
10) A PDF of the Newsletter needs to be uploaded on this page and on the facebook BCM group.
