CHECK OUT OUR RARE DISEASE DAY VIDEO HERE!
Rare Disease Day is a global day of awareness that celebrates our collective strength and is observed on the last day of February every year. The goal each year is to inform and educate the general public and decision-makers about the life-altering impacts of rare diseases.
- A rare disease is considered to be a disease that affects fewer than 200,000 people in the US at any given time.
- There are more than 6,800 rare diseases.
- Approximately 1 in 5 people living with cancer in the US are diagnosed with a rare cancer.
Appendiceal cancer/tumors and PMP are listed among the rare or “orphan” diseases acknowledged by the National Organization of Rare Disorders (NORD). Orphan diseases such as appendix cancer and PMP have such a low prevalence in the population that a doctor in a busy general practice is unlikely to see more than one case a year (if any). It also means that most pathologists see the disease infrequently and may misinterpret cell pathology, resulting in an incorrect diagnosis.
Patients would benefit from improved awareness and diagnostic methods in the medical community through earlier detection and treatment of these diseases.
Here are some ways you can get involved:
SPREAD THE WORD.
- Use the ACPMP Rare Disease Day frame on your Facebook profile picture!
- Share ACPMP’s social media content to get the word out to your friends, family and colleagues!
- Share our video highlighting amazing research from Wake Forest Organoid Research Center (WFORCE)
- For more info go to: acpmp.org/highlighting-research-rare-disease-day/
- Hosted by the National Organization for Rare Disorders (NORD) “Advancing Health Equity: A Community Conversation for Rare Disease Day” on Thursday, February 25 at 2:00pm EST. Register here: bit.ly/2NbvHsB
- Join the virtual “Rare Disease Day at NIH” conference on Monday, March 1st at 4:10pm EST for a discussion on the importance of patient advocacy in driving research progress. Register for free and see the day’s agenda. (Use the hashtag: #RDDNIH)
- Download the Rare Disease Day at NIH app – search “NIH NCATS Events” in your App Store.
- RareDiseaseDay.org – a central hub for ALL Rare Disease Day events, materials, and more, to help you participate and amplify this global day of awareness.
- ACPMP is an active and long standing member of the National Organization for Rare Disorders (NORD) and they will be hosting a few virtual events, visit: rarediseaseday.us to learn more!
- Interested in spreading social awareness while also fundraising for ACPMP? Use the instructions and tips below to host a Rare Disease Day Facebook Fundraiser for ACPMP! For more information about fundraisers outside of Facebook, please email us at firstname.lastname@example.org.
How-To Set Up a Facebook Fundraiser
- Visit https://www.facebook.com/fund/acpmpresearch/
- Click the Raise Money button
- Set a goal that you think is attainable
- Set an end date of February 29, 2020 – Rare Disease Day or the day after!
- Describe why you’re supporting ACPMP on Rare Disease Day
- Create your fundraiser
Tips for Facebook Fundraisers
Once you’ve launched your fundraiser, make it successful with these 5 tips:
- Spread the word! Invite your friends to join your fundraiser and share information about it on your page regularly.
- Make it personal! Think about and share your personal story and motivation to fundraise for ACPMP.
- Up the ante! Increase your goal amount if your fundraiser is doing well.
- Match the goal! Consider working with your friends and family by making a matching gift.
- Thank your friends! Thank each donor, share progress updates by tagging friends, and send private messages to say thank you.