Tagged: ALS advocacy, ALS Awareness, Rare Disease Day 2023, whyrare
- This topic has 4 replies, 2 voices, and was last updated 1 month, 2 weeks ago by Dagmar Munn.
January 26, 2023 at 1:01 am #23405
As a member of the rare disease community, BioNews Inc. invites you to provide us with a typed, 150-200 word answer to the question, “Why does rare disease awareness matter to you?”
Email your response to [email protected] along with two high-quality pictures of yourself that capture your “why.”
We encourage you to share your response on your personal social media accounts, tagging BioNews and using the hashtag #WhyRare.
Throughout February, your submission could be featured on our social media channels! For more on how to share your story with us, visit our Rare Disease Day contribution guide: https://lnkd.in/dTz6Dyv5.
If you have any questions about how to participate or in writing your answer, let us know in the comment section below
January 26, 2023 at 12:06 pm #23442
How to participate:
To participate in this initiative, please email your response to “Why does rare disease awareness matter to you?” to [email protected], along with two pictures of yourself, your social media accounts if you have them, and a signed release form.
Instructions and specifications are as follows:
- 150-200 words answering the question “why does rare disease awareness matter to you.” Please try to adhere to this word count as responses longer than 200 words may not be accepted.
- Please submit responses in a Microsoft Word attachment in your email.
- The subject of the email should be as follows: Full Name – RD Awareness 2023 – name of rare disease and your connection to it (patient, caregiver, etc.). Example: Brittany Foster – RD Awareness 2023 – Pulmonary Hypertension Patient
- Attach at least two high-quality pictures of yourself/ capturing your “why” in PNG, JPEG, or JPG format. If anybody besides yourself appears in your pictures, please notate their names so we can add them to the post.
- In the text of the email, include your full name, rare disease community, Instagram handle, Facebook URL, or LinkedIn URL so we can tag you if your submission is selected during the month of February.
- Sign the attached PDF electronically by downloading the PDF and use this free e-sign link https://www.pdfescape.com/
-After clicking on the link, upload the PDF file and use text boxes/ signatures where applicable on the form to sign it.
- Save the file and attach the signed PDF to your email.
Thank you for your willingness to help us raise awareness during the month of February, and we encourage you to share your story on your own social media accounts; Follow us on LinkedIn, Instagram @ bionewsservices, and Facebook, and tag BioNews and use the hashtag #WhyRare when posting.
Mark it on your calendar and spread the word! On Feb. 28, 2023, BioNews will be posting something special for all rare disease communities that will be shared on our corporate social media accounts and our rare disease websites.
BioNews Team (and ALS News Today)
January 26, 2023 at 4:12 pm #23456Maggie BroerenParticipant
A rare disease matters to me as a person with ALS. I want there to be a cure sooner than later so fewer people will have to endure this horrible disease. Living in a constant state of grief is obviously hard for me but also for families, friends and caregivers. My prayer is for more research and caring professionals to help alleviate the sorrow which accompanies ALS.
January 30, 2023 at 2:23 pm #23463
Maggie, I really liked what you wrote – – your sentiments I’m sure are shared by many.
Why don’t you submit this for the Rare Disease Day initiative? All you need to do is write your paragraph in a Word document and email it in. I can help if you need it.
February 2, 2023 at 11:22 am #23480
Maggie, I have sent you a private message with what I need from you in order to complete your submission. Thank you!
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