June 5, 2020

‘It Is Time for Patients to Gain More Power Over Their Health’

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The Children’s Tumor Foundation, an AllStripes partner, is on a mission to show the value of patients’ voices and inclusion in the decision-making process.

The Children’s Tumor Foundation is one of AllStripes’ earliest foundation partners and was truly a pioneer on this platform to include patients more actively in research.

“It is time for patients to gain more power over their health, and AllStripes supports this,” said Pamela Knight, the Clinical Director of the Children’s Tumor Foundation, also known as CTF.

CTF, founded in 1978, believes strongly in the value of patients’ voices and inclusion in the decision-making process, and our partnership was born out of a shared passion for moving neurofibromatosis research forward.

There are three types of neurofibromatosis (NF), a rare condition that causes tumors to grow on nerves. Onno Faber, AllStripes’ Co-founder, is an NF2 patient and has been an active voice in the NF community, championing the need for a patient-centered platform that brings together data from across the community to fuel multiple research projects.

The partnership has helped people become more aware of their rights as patients, Pamela said, and “AllStripes is pursuing something people had claimed was not technically feasible - harmonizing medical records” from many different sources.

Fostering community connections, while pushing for progress

CTF has a strong research focus, but also works on spreading awareness and improving care for the NF community. NF causes tumors to grow on nerves — it is complex and manifests differently for each individual, but the NF community is adaptable, brave and devoted to one another, according to Pamela.

“Being part of a community focused on reducing suffering feels meaningful,” she said.

This is exemplified every year when CTF brings together hundreds of people from the NF community through the NF patient forum.

“It feels like a big family, with mutual respect and admiration for each other and a shared determination,” Pamela said.

To serve this community, the organization aims to make research as accessible as possible. In addition to working with AllStripes, CTF encourages open science and collaboration through their patient registry and tissue biobank, because these research tools can speed up the progress of clinical trial design and development and prevent the duplication of efforts.

Pamela believes that “a foundation can be a true research partner by creating research consortia and developing shared tools for research.”

CTF Leaders

Successful drug approval and future research

In April 2020, the U.S. Food and Drug Administration approved the first drug for NF1, one of the three types of NF and a condition which affects 1 in 3,000 people worldwide.

This is an achievement for the entire NF community and CTF aims to use the learnings from this successful launch and drug approval as they continue to develop new treatments for NF.

Several initiatives are being planned by CTF to attract a new generation of scientists to research NF1, NF2 and schwannomatosis not only in the U.S. but also globally, as they expand to Europe.

CTF offers a variety of resources for the NF community. For the latest news, research and NF-related community events, visit CTF’s website and social media channels.

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