当严佳一(音译)在明尼苏达大学(University of Minnesota)攻读药学博士学位时，他被要求选择一个研究重点方向, he landed on a topic that was very personal.

这位三年级的研究生决定对软骨发育不全成人的生活经历进行广泛的研究, the most common form of dwarfism. Jiayi, who expects to graduate with a Doctor of Pharmacy degree in 2026, 在今年早些时候由该校孤儿药物研究中心组织的罕见病日活动上展示了他的研究结果.

“Doing the research, 然后把自己放在那里分享原始研究的进展, 有助于提高对澳门正规博彩十大排行平台社区和澳门正规博彩十大排行平台可能面临的一些挑战的认识,” says Jiayi, who was born with achondroplasia. “我的目标是让观众知道澳门正规博彩十大排行平台需要注意一些事情.”

Jiayi is one of five students to receive support from 澳门正规博彩十大排行平台’s RARE Scholars program for the 2024-25 academic year. The program was created to offer financial assistance to U.S. 患有罕见遗传疾病的大学生——现在包括软骨发育不全, Batten disease, hemophilia A, mucopolysaccharidosis (MPS) and phenylketonuria (PKU). Since 2018, the program has given more than $125,6万至26名像佳一这样在学校和社区活动中表现出杰出领导力和参与能力的学生.

“Every year the RARE Scholars award recipients are impressive, and this year’s cohort is truly exceptional,” says Marni Kottle, Executive Vice President, Chief Corporate Affairs Officer. “澳门正规博彩十大排行平台很自豪能在帮助这些人完成大学和研究生学业方面发挥一点作用, as they pursue their passions and begin their careers.”

嘉义认为，是教授和一些年长的学生让他在学术界更有归属感, enabling him to excel in his academic pursuits. In addition to becoming a pharmacist, he’s committed to making the world kinder and more accepting. 他相信进行和分享他的研究将帮助他实现这一承诺.

“I just really want to dedicate myself to this field,” Jiayi says. “I want to advocate, share my voice and share my experience to make myself heard, and make sure other people are heard as well.”

Allison Lowrie: Beginning Her Journey at Texas A&M

上个月，奖学金获得者Allison Lowrie开始了她的大学之旅，当时她正在德州体育学院读大一&M University.

艾利森住在北大，她正在学习动物科学，和她的小狗住在校外. 对于一个第一次离家生活的大学生来说，管理北京大学面临着独特的挑战. 这种遗传代谢疾病的特点是缺乏一种酶，这种酶会抑制身体分解一种叫做苯丙氨酸的氨基酸的能力，这种氨基酸存在于所有含有蛋白质的食物中. 患有PKU的人限制他们的蛋白质摄入量，并可能面临与这种疾病相关的认知问题.

“I was a little nervous about the transition, but it’s a great community, and I’ve already met a lot of people,” says Allison, “One of the things that’s kept me active is taking my dog for walks. We walk around, and I’m meeting so many new people.”  

尽管艾莉森与蛋白质的关系很复杂，但她计划在肉类科学领域发展事业.

“激发我兴趣的是在高中期间参加美国未来农民组织,” she says. “我在那里遇到了一些很棒的业内人士，他们从事检验或实验室研究, and I got to do a lot of behind-the-scenes things, dive deep into the actual career and do some internships.”

Allyson Chan: Starting Pursuit of Career in Legal Field at Occidental

与此同时，艾莉森·陈(Allyson Chan)正在洛杉矶的西方学院(Occidental College)开始她的第一年.

“Geographically, I think the area has a lot to offer because LA is so rich in culture, and it’s very diverse,” says Allyson, who is living with MPS IVA, a rare, progressive condition that can impact organs, bones and other parts of the body.

Allyson plans to study sociology and politics. While living with MPS IVA includes some significant challenges, 艾莉森说，她期待着找到新的方法来推动自己的学业, including by reading more, 提高她的写作技巧，集中精力准备研究生院.

她说:“我真的希望五年后我能在法学院学习，成为一名律师。. “我考虑过专注于知识产权，或者可能是家庭法.” 

Brian DuVal:在范德比尔特大学攻读公共卫生研究生学位 

布赖恩·杜瓦尔正在范德比尔特大学攻读公共卫生硕士学位，预计将于2026年完成学业.

Brian says living with hemophilia A, 一种遗传性出血性疾病，可以抑制身体的凝血能力，导致无法控制的出血和不可逆的关节损伤, has influenced his academic path and career ambitions. 他希望利用自己的学位，放大出血性疾病社区的声音，并为改善药物获取的政策做出贡献.

“I know that the hemophilia community needs leaders,” says Brian, 他之前在美国血友病联合会担任宣传和外展协调员. “我的目标是在直接影响我和我认识的人的健康的事情上发挥作用. I feel a great deal of personal responsibility.”

除了他的学业，布莱恩说他期待着探索纳什维尔的标志性音乐场景.

“到目前为止，我已经去了几场音乐会，我真的很期待从百老汇的主要旅游区扩展出去，探索当地人喜欢听音乐的地方,” he says.  

威尔·麦克林托克:在华盛顿学习计算机科学，同时回馈北大社区 

Will McClintock, who received a RARE Scholars award for a second consecutive second year, is a sophomore at the University of Washington. 这位前高中游泳运动员在他的简历上又增加了一项水上运动, joining the water polo club, and was recently accepted into the school’s computer science program. He’s also the recruiting chair of his fraternity.

While still refining his goals for the future, Will pictures himself working in computer science, potentially in big data, and for now is enjoying campus life.

“The campus is gorgeous,” he says. “在我人生的这个阶段，离家两个小时的车程也是完美的.” 

In addition to his busy college schedule, Will会抽出时间来帮助和北大一起生活的孩子和他们的家人.

“This summer, 我开始在华盛顿大学人类发展与残疾研究所做志愿者,” says Will, who was an IHDD client as a child. “The people there have known me my entire life. They took my blood samples when I was 2 years old, 我一直在与IHDD合作，为其他患有PKU的儿童和家庭争取捐赠柳叶刀用于抽血.”

Learn more about the RARE Scholars program, including how to apply. 2025-26学年的申请窗口将于2025年2月28日开放.