You Should Represent SYNGAP1 During Rare Disease Week on Capitol Hill

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What is Rare Disease Week on Capitol Hill?

2024 will mark the 13th year that Rare Disease Week visits Capitol Hill. Every year, this week inspires and empowers hundreds of advocates. Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, brings together hundreds of rare disease individuals, family members, caregivers, and advocates from across the country to make their voices heard by their members of Congress. During the week of February 25 – March 1, 2024, advocates and caregivers representing rare disease groups will travel to Washington DC. There, they will be educated on policy proposals impacting the rare disease community and be provided opportunities to advocate for policy changes directly to their members of Congress and their staff.

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 thousands of rare diseases that affect millions of people worldwide. There are over 7,000 known rare diseases, and the majority of these have no cure or effective treatment. A rare disease is defined as a condition that affects fewer than 200,000 people globally. For comparison, our latest census counts 1,297 patients diagnosed with SYNGAP1. (Read more here.)

Preliminary Agenda:

Sunday, February 25th:

  • Documentary Screening, Ronald Reagan Building and International Trade Center (5:00 pm ET)

Monday, February 26th:

  • Legislative Conference, Ronald Reagan Building and International Trade Center
  • YARR Meet Up (6:00 pm ET)

Tuesday, February 27th:

  • Meetings with Members of Congress on Capitol Hill

Wednesday, February 28th:

  • 12pm: Rare Disease Congressional Caucus Briefing
  • 4pm: Rare Artist Reception

Thursday, February 29th:

  • Rare Disease Day at NIH

Friday, March 1st:

  • Rare Disease Day at FDA

Complete details for 2024 will be forthcoming, but for some clarity, last year’s complete agenda is here. Last year’s video from EveryLife Foundation is below.

If you have a connection to SYNGAP1, you are welcome. Whether or not you have any advocacy experience, we want you there. You have a voice … you have a story to share … Rare Disease Week is your platform – please join us. Here’s why you should:

  1. Advocacy and Awareness: Rare Disease Week provides a unique opportunity for SYNGAP1 families to share our personal stories and experiences with lawmakers, raising awareness about the challenges we face.
  2. Policy Influence: Meeting with legislators and their staff on Capitol Hill can help shape policies related to rare diseases, research funding, and healthcare access.
  3. Research Funding: Advocacy efforts at Rare Disease Week can contribute to securing more funding for rare disease research, which is critical for developing treatments and therapies for SYNGAP1 and other rare conditions.
  4. Learning and Education: The event includes educational sessions and workshops on advocacy, healthcare, and rare disease-related topics. These can empower parents and caregivers with knowledge and skills to better support our loved ones.
  1. Networking: Building relationships with families affected by SYNGAP1, rare disease advocates, patient organizations, and healthcare professionals expands access to valuable resources, information, and support networks.
  2. Making a Difference: By attending Rare Disease Week, you actively participate in efforts to improve the lives of our loved ones.
  3. Access to Experts: Capitol Hill events feature experts in the field of rare diseases, genetics, and/or neurodevelopmental disorders. You can engage with these experts to gain insights and guidance for managing SYNGAP1-related challenges.

If you are interested in attending, EveryLife Foundation is accepting applications for travel reimbursement. APPLICATIONS CLOSE ON NOVEMBER 8TH! Notification regarding award status is expected by the week of December 8.

Attending Rare Disease Week or any similar conference is not something that you will forget. You will certainly bring your experience home to your community and your state. We are all advocates for the well-being of our SYNGAP1 family – only by telling our story in the world will people listen. Reaching out will help us move mountains and change the lives of our loved ones.

If you’re still not convinced, please read these first-hand accounts of advocacy in action or watch a webinar hosted by SRF:

  • SRF – Our Voice is Getting Louder! (blog post)
  • SRF Attended Advanced Therapies Week In Miami – When will you go to a conference for SYNGAP1? (blog post)
  • Let Me Hear YOUR Voice: Effecting Change through Effective Advocacy (webinar)

We are truly stronger together!