Communications

Communication Plan



2021 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
 

 

Moreover, it could be necessary to have an announce, if there are news related with BCM Gene Therapy or with the BCM Patient Registry.
 



 

Social Networks

 

 

Facebook BCMFF page – cover

Facebook BCM private group

 


Twitter account

Instagram account

 

Linkedin account

 

BCMFF Newsletter



Newsletters’ Archive

 

2021

Rare Disease Day

BCMFF-Newsletter-2021-RRD

BCMFF-Newsletter-2021-RRD-Oculisti

2020

Rare Disease Day

BCMFF-Newsletter-2020-RRD

Spring Newsletter

BCMFF-Newsletter-2020-Spring

May 20th – BCM International Awareness Day

BCMFF-Newsletter-2020-Webinar1

BCMFF-Newsletter-2020-May20Webinar

BCMFF-Newsletter-2020-ArtContest

BCMFF-Newsletter-2020-ArtContestWinners

Summer Newsletter

BCMFF-Newsletter-2020-Summer

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

BCMFF-Newsletter-2019-RRD

Spring Newsletter

BCMFF-Newsletter-2019-Spring

May 20th – BCM International Awareness Day

BCMFF-Newsletter-2019-May20

Summer

BCMFF-Newsletter-2019-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

BCMFF-Newsletter-2018-Spring

Mestre-Venice European Meeting

BCMFF-Newsletter-2018-MeetingMestre

Thanksgiving

BCMFF-Newsletter-2018-Thanksgiving

Holidays

BCMFF-Newsletter-2018-Holidays

2017

Spring

BCMFF-Newsletter-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-RRD

BCMFF-Newsletter-2016-Spring

BCMFF-Newsletter-2016-Summer

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

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.