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

2026

Rare Disease Day

BCMFF-Newsletter-2026-RareDiseaseDay

Spring Newsletter

2024

Rare Disease Day

BCMFF-Newsletter-2024-RRD

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

2023

Rare Disease Day

Charlotte April 29th 2023 Meeting

Spring Newsletter

BCMFF-2023-Spring Newsletter

May 20th – BCM International Awareness Day

BCMFF-2023-May-20-Awareness-Day

Summer Newsletter

BCMFF-2023-Summer-Newsletter

Registro – Do Something Great

BCMFF-2023-Do-something-great

Thanksgiving

#GivingTuesday Campaign

Holidays Newsletter

BCMFF-2023-Holidays Newsletter

2022

Rare Disease Day

Venice April 9th Invite

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

Spring Newsletter

BCMFF-Newsletter-2021-Spring

May 20th – BCM International Awareness Day

BCMFF-2021-May20th

Summer Newsletter

BCMFF Summer 2021 Newsletter

BCM Registry Campaign

2021-Do-Something-Great-BCMFF

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

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

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-Summer

BCMFF-Newsletter-2016-Holidays

List of Patients’ Interviews:

Robert Hicks

Jason Faulkner

Virgil Wade

George Donaldson

Oscar

Dean Monthei

Oscar

David Dilling

Jameson

Hawk Masters

Benedikt Romer

Kyle Bieze

Paul Rowland

Tom Rogers

Robert Finch

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.