Cure VCP Disease, Inc.

The broad goals of our organization are:
1. to improve the quality of life of VCP patients
2. to support the development of a cure and therapies for VCP disease

The specific objectives of our organization are:
1. to provide global education and awareness of VCP diseases to doctors, researchers, industry, patients, caregivers and the general public;
2. to develop and maintain a global patient registry of VCP disease patients;
3. to develop and maintain a fundraising vehicle to support awareness and education efforts;
4. to collaborate with other global organizations and entities which are promoting a cure for diseases which have symptoms similar to VCP diseases;
5. to sponsor, host and/or participate in events and activities that promote efforts to cure VCP diseases.

1. Establish care guidelines and a network of clinicians for VCP disease.
2. Promote patient and family education and support through patient conference/webinars, online support groups, and educational resources.
3. Promote scientific collaboration through the VCP Scientific Focus Group and Scientific Conference.
4. Increase patient identification through global patient registry.
5. Fund and support natural history, research tools, and scientific research.

1. An educated, diverse, and motivate Board of Directors
2. Established fundraisers, donation platforms and accounting systems
3. Outreach tools such as 1200+ e-mail database, website, social media and printed resources
4. Organizational memberships
5. Strategic partners
6. Network of scientists and clinicians
7. A strong patient community

In 2021:
• Conducted the VCP Standard of Care Consortium with 50 clinicians.
• Hosted the VCP Scientific Conference with 90 scientists.
• Funded two natural history studies with strategic partners.
• Selected as a CZI Rare As One grantee.

In 2020:
• Launched a patient records collection through AllStripes.
• Launched our patient webinar series.
• Started a monthly VCP Scientific Focus Group meeting of pre-clinical and clinical scientists.
• Conducted FDA Patient Listening Session.
• Awarded first research grant through Uplifting Athletes Young Investigator Draft.
• Conducted twice a month VCP Happy Hours for a time of fellowship between patients and care partners.

In 2019:
• Joined NORD as a member.
• Conducted our first-ever patient conference on April 12-13, 2019 at Washington University in St. Louis.
• Attended Rare Disease Week on Capitol Hill. Exhibited at Rare Disease Day at the NIH.
• Distributed 2,000 patient brochures.
• Collaborating with leading researchers to assist them in clinical trials.

In 2018 (our founding year):
• Created a new webpage at www.curevcp.org to aggregate disease-specific information and resources together.
• Distributed a digital newsletter to over 100 advocates/patients and over 150 doctors.
• Created a patient registry, hosted by CoRDS, to capture research data of all those afflicted with IBMPFD. We have begun collecting patient data.
• Created an informational brochure to distribute to patients and doctors.
• In July 2018, exhibited at the Florida Society of Rheumatology 2018 Annual Meeting.
• Joined Global Genes as a Foundation Alliance member.