Letters and Arts Project
Background
In recognition of the unique challenges faced by patients affected by rare diseases as well as their families, we introduce the "Letters and Art Project." With the help of our volunteers, we give physical/digital cards, bookmarks, posters, coloring pages, and other artwork to patients fighting rare diseases, healthcare workers, and caretakers. This program is aimed at giving support mentally and emotionally. Personalized letters and art are also included in our care packages to specific patients facing rare diseases.
What is it?
01.
Volunteer support
SARD volunteers work to create crafts and letters to give to patients, healthcare workers, and caretakers. They make sure to check that all art is appropriate and sanitized before being sent to the hospital.
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Volunteers and chapters communicate with hospitals near them to donate the arts and crafts. This allows for us to bring these positive creations to many different areas and people.
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SARD chapters hold kids' creation events where kids volunteer to make crafts and letters.
Letter and Art Guidelines
Creating letters and artwork for rare disease patients requires sensitivity, empathy, and respect for their unique experiences and challenges. Here are some guidelines to consider when crafting letters and art for individuals affected by rare diseases:
Some things to say​
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Empathy and Support:
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DO express empathy and understanding for the individual's journey with the rare disease.
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DO offer words of encouragement and support to uplift their spirits.
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DO acknowledge the challenges they may be facing and validate their feelings and experiences.
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Positivity:
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DO convey messages of positivity and resilience.
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DO inspire optimism and confidence.
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DO focus on strengths, achievements, and moments of joy or happiness.
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Do include jokes or humor
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Inclusivity and Respect:
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DO use inclusive language and avoid making assumptions about the individual's experiences or capabilities.
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DO respect the individual's autonomy and choices regarding their health and treatment.
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DO show appreciation for their unique perspective and contributions.
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Creativity and Expression:
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DO encourage creativity and self-expression in your letter or artwork (such as asking them to draw a picture of their favorite ______ )
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DO use colors, illustrations, and creative designs to convey your message and evoke positive emotions.
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DO allow space for the individual to engage with and interpret the artwork in their own way.
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Now, let's consider what NOT to say or include:
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Avoidance of Predictive or Religious Statements:
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DON'T make predictive statements about the individual's future health or prognosis.
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DON'T include religious messages or references unless you are certain they align with the individual's beliefs.
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Avoid Comparisons or Minimization:
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DON'T compare the individual's experience to others or minimize the impact of their rare disease.
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DON'T offer unsolicited advice or suggestions about treatments or cures.
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Avoid Overly Sympathetic Language:
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DON'T use language that portrays the individual as a victim or elicits pity.
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DON'T dwell excessively on the negative aspects of the rare disease or its effects.
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Avoid Stereotypes or Stigmatizing Language:
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DON'T use stigmatizing language or reinforce stereotypes about individuals with rare diseases.
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DON'T make assumptions about the individual's abilities, limitations, or experiences.
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Avoid Intrusive Questions:
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DON'T ask intrusive or overly personal questions about the individual's health or medical history.
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DON'T pry into sensitive topics.
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No Dark Humor
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Be creative with it and have fun!
How to participate:
1. Read the letters and art guidelines
2. Make your letters and art adhering to our guidelines
3. Print out and attach our tag to your creations (helps us communicate with patients and create new partnerships with those interested in our organization)
4. Contact your local hospitals (usually by the volunteer email or phone number) to coordinate the donation of your creations
5. Bring your letters and art to the hospital
6. Those in the Student Advocates Program, fill out our community service form
7. Thank yourself for your hard work!
*Please note that one additional service hour is awarded to our volunteers for attaching our tags and coordinating the drop off on top of the time spent making artwork.
LETTERS AND ART DONATION CLOSED UNTIL FURTHER NOTICE IN ANTICIPATION FOR LEADERSHIP ELECTIONS. CHECK BACK SOON THANK YOU FOR YOUR PATIENCE!​
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STUDENT ADVOCATES PROGRAM AND STARTING CHAPTERS ARE OPEN AND RUNNING, INTERNATIONAL BOARD ELECTIONS OPEN NOVEMBER 1ST IF YOU ARE INTERESTED!
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