Rare Disease Day 2024 – what is it & how can you help SYNGAP1?

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What is Rare Disease Day?

Rare Disease Day is an international observance held on the last day of February every year. The purpose of this day is to raise awareness about the more than 7,000 rare diseases that affect over 300 million people worldwide. A rare disease is defined as a condition that affects fewer than 1 in 2,000 people. Across the globe, there have been only 1,339 diagnosed with SYNGAP1.

Why is Rare Disease Day Important?

Despite the large number of people affected by rare diseases, many of these conditions are still not well understood or recognized by the general public. This is why Rare Disease Day is so important – it provides an opportunity for people living with rare diseases, their families, and advocates to come together and raise their voices in support of better care, treatments, and ultimately a cure. That is exactly what we do at the Syngap Research Fund, 501c3.

Why February 29?

Rare Disease Day is held on the last day of February because it is the rarest day of the year, symbolizing the rarity of diseases such as SYNGAP1. The last day of February also holds significance as the day when the European Organisation for Rare Diseases (EURORDIS) was founded, making it a fitting date to commemorate the needs and challenges faced by the hundreds of millions of people affected by rare diseases.

How Can You Help?

You can help spread awareness in your community, perhaps through local media. Check out these stories featuring Hattie Foster and Saylor Baysden from 2023:

Represent SYNGAP1 on Capitol Hill during Rare Disease Week. Meet with lawmakers and their staff to draw attention to the lack of understanding, recognition, and resources that people living with rare diseases often face. Drive home the fact that Rare Disease Day is not only about raising awareness but also about empowering individuals and communities to advocate for change and to work towards a brighter future for all of us affected by rare diseases.

https://youtu.be/IfY_CZ1C-E4?si=dU1r5r

Invest in SYNGAP1 research. Join SRF in celebrating Rare Disease Day by donating and sharing this link with your community. Remember, the founders of SynGAP Research Fund cover overhead, allowing donations to go toward research and programs to help SYNGAP1 patients.

Continue your efforts beyond February 29, 2024!

As always – thank you for whatever you choose to do to help SynGAP Research Fund find a cure for our families. We’re in this together!