Help for Rare Families Affected by the Ukrainian Crisis
Global Genes is working with partners from around the world to provide support for rare disease families from Ukraine who have been affected or displaced by the ongoing war.
TuTuk Volodymyr, head of the Ukrainian Association of Patients with phenylketonuria (PKU) discusses they have been able to do with the funds received from the Global Genes UKR Rare Relief Grant.
The grant that Global Genes provided in this case helped to provide medical supplies and postal services to send aid for patients with cystic fibrosis currently living in Ukraine.
For companies or philanthropic organizations willing to contribute to the Ukrainian RARE Relief Fund
Funding will go to credible and registered organizations that are actively providing direct relief to Ukrainian rare disease families or other relevant support services. Learn why your donation matters here. Contact us at [email protected] for any questions.
For organizations providing on-the-ground support for rare disease Ukrainian families
Global Genes is coordinating with partners and providing grants to rare disease organizations who are directly helping displaced rare families with critical and immediate needs in Ukraine and surrounding countries.
Email us at [email protected] for more information.
For Ukrainian people and families with rare disease affected or displaced
The RARE Concierge Patient Services Guides at Global Genes are here to help with one-on-one assistance. A Patient Services Guide will get back to you as soon as possible and help direct you to resources, information, patient groups or partners on the ground in and around Ukraine, in the U.S. or other regions.
How to help:
- DONATE funds to help support RARE Impact Grants and other efforts to help displaced rare disease families who need immediate assistance. Together, with individual donations and support from our partners, we can make a huge difference in meeting the urgent and unique needs of rare disease families affected by this tragic war.
- SHARE this information with those in need, or organizations assisting refugees, so they can access the resources and provide information on their efforts and support needs
- CONTRIBUTE to our growing list of resources to share with Ukrainian rare families. Email us to share helpful information that can be given to people when they need it most.
- SPREAD the word on social media and with other like-minded advocates.
YOUR DONATION MATTERS
Your tax-deductible gift makes it possible for our partners and team to continue their work for the Ukraine RARE Relief Project. 100% of your donation will help fund resources such as:
- RARE Impact Grants to help displaced rare disease families who need immediate assistance
- Patient and family support services, helpline, and other resources
- Other specific needs that arise within the rare disease community as time passes
Together, with individual donations and support from industry partners, your funds make a huge difference in the lives of those affected by the war
Have questions or want to talk to Global Genes about how we can work together? Email us at [email protected].