Pulmonary Hypertension News Forums Forums Awareness and Advocacy Will You Help Us With Our 2023 Rare Disease Day Campaign?

  • Will You Help Us With Our 2023 Rare Disease Day Campaign?

    Posted by jen-cueva on January 23, 2023 at 10:31 am

    As a member of the rare disease community, BioNews invites you to join our Rare Disease Day 2023 campaign. Throughout February, we will be featuring on BioNews social media accounts our rare disease community’s responses to the question, Why does rare disease awareness matter to you?

    All community members are encouraged to submit a short personal response reflecting on their “why” and to share it on their personal social media accounts/pages, tagging BioNews and using the hashtag #WhyRare.

    Participants can include anyone affected by a rare disease, including patients, family members, caregivers, partners, or friends of someone living with a rare disease, as well as patient advocates and healthcare professionals. Can we count on you?

    For participation, check out this message from Brittany Foster, our HR people, culture manager, and fellow PH patient. 

    jen-cueva replied 1 year ago 3 Members · 6 Replies
  • 6 Replies
  • jen-cueva

    Member
    January 25, 2023 at 12:49 pm

    Hey, y’all, please share this campaign and consider participating in this important event for Rare Disease Day, which is around the corner.

    You can do a short video or written response. You can also do several or both. Share this campaign with your family and friends to spread awareness about all rare diseases.

    If you have any questions, feel free to email Brittany at [email protected].

  • charlene-rains

    Member
    January 29, 2023 at 11:56 am

    I am having problems getting Brittany’s message using the link at the bottom of your post. I am newly diagnosed, but interested in participating.

    • jen-cueva

      Member
      January 30, 2023 at 9:54 am

      Hi @bamagramma, that’s great! My apologies; please let me know if this message is viewable. I’ll edit the initial post above, too.

      RDD 2023 #WhyRare

      Thanks so much for helping us in this critical Rare Disease Day campaign. We appreciate you.

    • Colleen

      Member
      January 31, 2023 at 12:49 am

      @bamagramma wonderful! Thank you for your willingness to participate.

      Here is Brittany’s letter for you and anyone else having difficulties opening it.

      ——————————————————————————————–

      Hello from BioNews to our Rare Disease Community!

      I am Brittany Foster, BioNews’ HR – People and Culture Manager, and a rare disease
      patient living with pulmonary hypertension. At BioNews, it is our mission to help those
      living with rare diseases achieve a better quality of life.

      As a member of the rare disease community, BioNews invites you to join our Rare
      Disease Day 2023 campaign. Throughout the month of February, we will be featuring on
      BioNews social media accounts our rare disease community’s responses to the question
      “Why does rare disease awareness matter to you?”

      All members of the community are encouraged to submit a short personal response
      reflecting on their “why” and to share it on their personal social media accounts/pages,
      tagging BioNews and using the hashtag #WhyRare.

      Participants can include anyone affected by a rare disease, including patients, family
      members, caregivers, partners or friends of someone living with a rare disease, as well
      as patient advocates and healthcare professionals.

      Throughout February, your submission could be featured on our BioNews corporate
      LinkedIn, Facebook, and Instagram pages. If your submission is specific to one of the
      rare diseases BioNews covers on social media, such as Pulmonary Hypertension News,
      your post may be featured on that social media page (Facebook or Instagram).

      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:
      a. 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.
      b. Please submit responses in a Microsoft Word attachment in your email.
      c. 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.). Ex.: Brittany
      Foster – RD Awareness 2023 – Pulmonary Hypertension Patient
      d. 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.
      e. 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.
      f. Sign the attached PDF electronically by downloading the PDF and use this free esign 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.
      g. 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 to 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.

      Thank you,
      BioNews Team

  • jen-cueva

    Member
    January 31, 2023 at 10:20 am

    Hi @colleensteele, thanks for sharing this information in case others have trouble opening the document with Brittany’s message.

    @bamagramma and others, this Sunday, 2/5, is the last day for video submissions. They want time to schedule these posts around Rare Disease Day on Feb.28.

    Let’s share our voices with a short written statement to answer this question or a very brief video submission. Thank you so much for your attention and participation.

  • jen-cueva

    Member
    February 28, 2023 at 1:58 pm

    Happy Rare Disease Day, y’all! BioNews launched its #whyrare campaign for Rare Disease Day. Today, the YouTube video was released. It’s such a powerful video. The team at BioNews, contributors, etc., share why rare disease awareness matters to them. It turned out awesome, and I’m honored to participate in this campaign.

    BioNews #whyrare

    Check it out and share it on your social media channels. Let’s use our voices because together, we are stronger! Let us know your thoughts.

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