For the latest information on events and medical seminars related to GACI/ARHR2 or rare diseases, please follow us on social media @gaciglobal.
Current Events/Campaigns/Special Days
Upcoming Events / Special Dates
Personalized Santa Letters – 2021
This fundraiser is now over.
The second annual Worldwide Walk took place on September 25th, 2021. Thank you to everyone who created a team, joined a team, fundraised, or donated to help fundraise and raise awareness of GACI/ARHR2.
2021 GACI Global Family Fun Weekend
The family fun weekend was held on July 16th-18th, 2021. Due to the COVID-19 pandemic, the Family Fun Weekend was a virtual event. Click here to see the program of events. We hope to be able to offer an in-person family event at some point in the future when it is once again safe to gather together.
2021 GACI Global Family Conference
Unfortunately, we have had to make the difficult decision to switch to a virtual event. The health and safety of the members of our GACI/ARHR2 community is our number one priority. With the ongoing pandemic, we feel that a virtual event is the safest option for everyone at this time. We hope to be able to offer an in-person family event at some point in the near future when it is once again safe to gather together.
In lieu of our planned conference, in July 2021 we will be holding the
GACI Global Virtual Family Fun Weekend. We will offer something for everyone – parent/patient discussion groups, Q&A with experts, scientific updates, and fun activities for the whole family!
Rare Disease Day – Feb. 28th, 2021.
GACI Global Worldwide Walk – Sept. 12th, 2020.
The GACI Global Worldwide Walk was held on September 12th, 2020. For the first time ever, members from the GACI/ARHR2 community were unified on one day around one shared cause when they participated in the GACI Global Worldwide Walk. Thank you to everyone who walked with us to raise awareness and to raise money to further the mission of GACI Global – to connect families to each other and the medical community, to provide current educational resources, and most importantly to support ongoing research for better treatment options. We can’t wait to do it again next year!
Around the world, Rare Disease Day is acknowledged on the last day of February, a month known for having a ‘rare’ number of days.
We are kicking off the ‘rare’ month of February with the second annual GACI/ARHR2 Awareness Day on February 1, 2020. Please join us in spreading awareness of the ultra-rare conditions of Generalized Arterial Calcification of Infancy (GACI) and Autosomal Recessive Hypophosphatemic Rickets Type 2 (ARHR2). Click here to find out more information about GACI/ARHR2 Awareness Day and how you can help to spread awareness of GACI/ARHR2 on Feb 1st.
GACI Global #GivingTuesday Campaign 2019
Our Giving Tuesday Fundraiser has now ended and thank you to everyone who donated. If you’d still like to donate, you can donate here on our website. All donations, whether big or small, are gratefully appreciated. Thank you for supporting GACI Global. Your contributions allow us to further our mission of connection, education, research and hope.
GACI Global Family Meeting 2019
Please let us know if you can join us at our GACI Global Family Meeting. The meeting is being held in the Sheraton San Diego Hotel & Marina on September 18th, 2019. Time to be confirmed. Inozyme, the pharmaceutical company working on developing a new treatment for GACI, will also be hosting a meeting for our group on the same day. Please complete the sign-up form if you hope to attend.
GACI Global Travel Scholarship
Click here for scholarship details
GACI Global 2019 Hope Award
The recipient of the 2019 Hope Award was Donna Hicks! Donna has given freely and willingly of her time to support GACI Global in our endeavors. More importantly, she has long been a source of support and encouragement for many in the GACI / ARHR2 Community. She is always willing to answer questions, offer a listening ear, or provide encouragement to those that are still in the trenches of a GACI diagnosis. Congratulations to Donna! ❤️
GACI Global Family Meeting 2019
Global Genes RARE Patient Advocacy Summit
The RARE Patient Advocacy Summit is a wonderful opportunity to make connections with other people affected by rare diseases. It is a two-day program of workshops, dinners and presentations on cutting edge research and therapies. It is the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world.
Dates: September 18 – 20, 2019.
Location: Sheraton, San Diego Hotel & Marina, San Diego, California, US.