Skip to content

Elevating Community Voices During Rare Disease Awareness Month

Rare Disease Month, held every February, represents an opportunity for the millions of patients, families, caregivers, advocates, clinicians and researchers who are a part of the Rare Disease Community to join together to raise awareness that can lead to better support and more treatments. And once again this year, NNPDF has a full schedule of exciting initiatives to highlight important issues related to Niemann-Pick disease during the global awareness event.

The theme for Rare Disease Month 2023 is “Share Your Colors”, which reflects one of NNPDF’s core goals – to make sure that the impact of Niemann Pick disease and the needs of our community are being heard and understood by people who can help make a positive difference. One way we are working to help members of our community share their stories is by providing support to patients and families to attend events planned by the Rare Disease Legislative Advocates (RDLA) on Capitol Hill in Washington, DC. This event is an important opportunity to help leaders in government and policy makers learn more about the challenges we face and the support that patients and families need. Participants will also have the opportunity to attend workshops and meet with other rare disease leaders to discuss bringing positive change to rare disease communities in need. NNPDF has offered a limited number of $500 stipends to assist with hotel and travel to the event to encourage families who want to share their stories. 

We also have many other activities planned, including: 

  • Our NNPDF & NTASD sponsored community meeting with the research team from Azafaros to learn about the Phase 2 multi-national trial for AZ-3102 in Niemann-Pick Disease Type C and GM2 gangliosidosis.
  • A special “Thanking Healthcare Heroes” program where families can sign up to send a thank you card mailed by NNPDF to a provider who has had a positive impact on your health and your life.
  • Rare & Ready Advocacy Bootcamp to learn best practices to help reach out to  legislators and be a part of the policy decisions that affect our community.
  • Resources and ideas to help show your support on social media by updating your profile picture or sharing information cards provided by the Rare Disease Day sponsors.

Your participation in Rare Disease Awareness Month is a chance for you to help shape a better future for everyone affected by Niemann-Pick disease.

NNPDF is honored to be joining in this effort with you throughout the month.  Let’s show our colors and let the world see just how strong and dedicated we are!

Supporting one another. Supporting our community.